TY - JOUR AU - Chu, Jingjing AU - Li, Ying AU - Wang, Xinyi AU - Xu, Qun AU - Xu, Zherong PY - 2025/4/17 TI - Development of a Longitudinal Model for Disability Prediction in Older Adults in China: Analysis of CHARLS Data (2015-2020) JO - JMIR Aging SP - e66723 VL - 8 KW - disability KW - prediction model KW - older adults KW - China Health and Retirement Longitudinal Study KW - CHARLS KW - medical resources allocation N2 - Background: Disability profoundly affects older adults? quality of life and imposes considerable burdens on health care systems in China?s aging society. Timely predictive models are essential for early intervention. Objective: We aimed to build effective predictive models of disability for early intervention and management in older adults in China, integrating physical, cognitive, physiological, and psychological factors. Methods: Data from the China Health and Retirement Longitudinal Study (CHARLS), spanning from 2015 to 2020 and involving 2450 older individuals initially in good health, were analyzed. The dataset was randomly divided into a training set with 70% data and a testing set with 30% data. LASSO regression with 10-fold cross-validation identified key predictors, which were then used to develop an Extreme Gradient Boosting (XGBoost) model. Model performance was evaluated using receiever operating characteristic curves, calibration curves, and clinical decision and impact curves. Variable contributions were interpreted using SHapley Additive exPlanations (SHAP) values. Results: LASSO regression was used to evaluate 36 potential predictors, resulting in a model incorporating 9 key variables: age, hand grip strength, standing balance, the 5-repetition chair stand test (CS-5), pain, depression, cognition, respiratory function, and comorbidities. The XGBoost model demonstrated an area under the curve of 0.846 (95% CI 0.825?0.866) for the training set and 0.698 (95% CI 0.654?0.743) for the testing set. Calibration curves demonstrated reliable predictive accuracy, with mean absolute errors of 0.001 and 0.011 for the training and testing sets, respectively. Clinical decision and impact curves demonstrated significant utility across risk thresholds. SHAP analysis identified pain, respiratory function, and age as top predictors, highlighting their substantial roles in disability risk. Hand grip and the CS-5 also significantly influenced the model. A web-based application was developed for personalized risk assessment and decision-making. Conclusion: A reliable predictive model for 5-year disability risk in Chinese older adults was developed and validated. This model enables the identification of high-risk individuals, supports early interventions, and optimizes resource allocation. Future efforts will focus on updating the model with new CHARLS data and validating it with external datasets. UR - https://aging.jmir.org/2025/1/e66723 UR - http://dx.doi.org/10.2196/66723 ID - info:doi/10.2196/66723 ER - TY - JOUR AU - Mylonopoulou, Vasiliki AU - Cerna, Katerina AU - Weilenmann, Alexandra AU - Rost, Mattias AU - Holmlund, Tobias PY - 2025/4/15 TI - Experiences of Wheelchair Users With Spinal Cord Injury With Self-Tracking and Commercial Self-Tracking Technology (?In Our World, Calories Are Very Important?): Qualitative Interview Study JO - JMIR Hum Factors SP - e65207 VL - 12 KW - wheelchair KW - spinal cord injury KW - tracking KW - self-tracking KW - wellness technology KW - calories KW - health inequalities KW - inclusive design in mobile health KW - design KW - lifestyle app KW - artificial intelligence KW - AI N2 - Background: Commercial wearable and mobile wellness apps and devices have become increasingly affordable and ubiquitous. One of their aims is to assist the individual wearing them in adopting a healthier lifestyle through tracking and visualizing their data. Some of these devices and apps have a wheelchair mode that indicates that they are designed for different types of bodies (eg, wheelchair users with spinal cord injury [SCI]). However, research focuses mainly on designing and developing new condition-specific self-tracking technology, whereas the experiences of wheelchair users with SCI using self-tracking technology remain underexplored. Objective: The objectives of this study were to (1) provide a comprehensive overview of the literature in the field of self-tracking technology and wheelchair users (as a basis for the study), (2) present the self-tracking needs of wheelchair users with SCI, and (3) present their experiences and use of commercial self-tracking technology. Methods: We conducted semistructured interviews with wheelchair users with SCI to understand their experiences with self-tracking and self-tracking technologies, their self-tracking needs, and how they changed before and after the injury. The interviews were thematically analyzed using an inductive approach. Results: Our findings comprised three themes: (1) being a wheelchair user with SCI, (2) reasons for self-tracking, and (3) experiences with self-tracking technologies and tools. The last theme comprised 3 subthemes: self-tracking technology use, trust in self-tracking technology, and calorie tracking. Conclusions: In the Discussion section, we present how our findings relate to the literature and discuss the lack of trust in commercial self-tracking technologies regarding calorie tracking, as well as the role of wheelchair users with SCI in the design of commercial self-tracking technology. UR - https://humanfactors.jmir.org/2025/1/e65207 UR - http://dx.doi.org/10.2196/65207 UR - http://www.ncbi.nlm.nih.gov/pubmed/ ID - info:doi/10.2196/65207 ER - TY - JOUR AU - Mahmood, Atiya AU - Rikhtehgaran, Farinaz AU - Nasiri, Rojan AU - Hedayati, Niloofar AU - Pandsheno, Sepehr AU - Sharrock, Aislynn AU - Mora, Juanita Diana AU - Haji Hosseini, Sogol AU - Routhier, François AU - Mortenson, W.Ben PY - 2025/4/10 TI - Adaptation of the Stakeholders? Walkability/Wheelability Audit in Neighborhoods (SWAN) Tool for Individuals With Diverse Disabilities: Protocol for a Mixed Methods Study JO - JMIR Res Protoc SP - e60553 VL - 14 KW - age and accessibility KW - disability experiences KW - community engaged research KW - inclusive urban design KW - user-led built environment audits N2 - Background: The prevalence of sensory, cognitive, and mobility disabilities in Canada underscores the need to address environmental barriers. This study adapts and validates the Stakeholders? Walkability/Wheelability Audit in Neighborhoods (SWAN) tool to assess the challenges the built environment poses for individuals with disabilities, aiming to inform policy changes for accessibility and inclusivity. Objective: This study aims to (1) adapt the SWAN tool for those with hearing, vision, or cognitive disabilities; (2) validate SWAN tool for researching environmental barriers for people with disabilities, including older adults; and (3) offer insights for policy changes in the built environment, contributing to literature and guiding future research. Methods: The study uses a community-based research approach, carried out over 4 phases within an 18-month period in British Columbia. Phase 1 includes adapting and pilot-testing of the SWAN tool. In Phase 2, street intersections are identified for data collection using Geographic Information System tools and consultations with municipal officials. Phase 3 involves recruiting participants across four disability categories. The final phase includes analyzing the data and disseminating findings. Results: Data collection concluded in September 2024, involving 80 eligible participants across four streams in preidentified hotspots. The results are expected to be published in March 2025. To date, data collection is ongoing, and we are currently in the process of data analysis. Conclusions: This study will contribute to the growing body of research on built environment accessibility by adapting the SWAN tool for individuals with diverse disabilities. By identifying key barriers in urban spaces, the study aims to inform policy changes that will lead to more inclusive, accessible, and safe urban environments for all individuals. UR - https://www.researchprotocols.org/2025/1/e60553 UR - http://dx.doi.org/10.2196/60553 UR - http://www.ncbi.nlm.nih.gov/pubmed/ ID - info:doi/10.2196/60553 ER - TY - JOUR AU - Lancioni, E. Giulio AU - Alberti, Gloria AU - Filippini, Chiara AU - Singh, N. Nirbhay AU - O'Reilly, F. Mark AU - Sigafoos, Jeff AU - Chiariello, Valeria AU - Troccoli, Oriana PY - 2025/3/21 TI - A Technology System to Help People With Multiple Disabilities Increase Contact With Objects and Control Environmental Stimulation: Single-Case Research Design JO - JMIR Rehabil Assist Technol SP - e70378 VL - 12 KW - technology KW - sensor KW - webcam KW - blindness, intellectual disability KW - motor impairment KW - object contact KW - stimulation N2 - Background: People with severe-to-profound intellectual disability and sensory-motor impairment tend to be passive and detached from their immediate context. Objective: This study assessed a new technology system using a webcam to detect participants? responses (ie, hand contact with objects) and to trigger computer delivery of preferred environmental stimulation, such as music, contingent on (immediately after) the occurrence of those responses. Methods: In total, 8 adults with severe to profound intellectual disability and extensive motor and visual impairments participated in the study. Each participant was exposed to an ABACB design. The technology system did not provide stimulation during the A (baseline) phases, provided stimulation contingent on the responses during the B (intervention) phases, and provided stimulation throughout the sessions during the C (control) phase. Sessions lasted 5 minutes. Results: During the first baseline phase, the participants? mean frequency of responses per session was between about 3 and 6.5. During the first intervention phase, it increased to between about 10 and 18. It showed a clear decline during the second baseline phase, remained low during the control phase, and increased again during the second intervention phase. During this phase, it ranged from about 13 to 19.5. Conclusions: The new technology system might be a useful tool to help people with intellectual and sensory-motor disabilities increase object contact and stimulation control. UR - https://rehab.jmir.org/2025/1/e70378 UR - http://dx.doi.org/10.2196/70378 UR - http://www.ncbi.nlm.nih.gov/pubmed/40117571 ID - info:doi/10.2196/70378 ER - TY - JOUR AU - Rojas-Cárdenas, Andrés AU - Cleaver, Shaun AU - Sarmiento, Ivan AU - Rock, Julie AU - Grenier, Yan AU - Charrier, Francis AU - Gosselin, Rose-Anne AU - Cockcroft, Anne AU - Andersson, Neil PY - 2025/3/10 TI - Indigenous Community Views of Disability in Canada: Protocol for a Scoping Review JO - JMIR Res Protoc SP - e57590 VL - 14 KW - Indigenous health KW - intercultural dialog KW - cultural safety KW - traditional medicine KW - disability N2 - Background: Indigenous people do not necessarily view disability in the same way as do other groups. Indigenous concepts of disability are connected to their ancestral history, cultural customs, and environmental context. Some Indigenous languages do not contain a word equivalent to disability. Western approaches to disability seldom reflect the voices of Indigenous people. Objective: The objective of this scoping review is to collate the perspectives, concepts, and understandings of disability in Indigenous communities in Canada and to map the factors that influence social approaches to disability from an Indigenous perspective. Methods: Following the methodological framework for scoping reviews of Arksey and O?Malley, we will search electronic databases, including PubMed, Scopus, Web of Science, EBSCOhost ProQuest, Autochtonia, and APA PsycINFO. We will search gray literature through the Google search engine, conference abstracts, dissertation databases, government documents, and Indigenous organization websites. We will include quantitative, qualitative, and mixed methods studies in English and French. The included studies will describe Indigenous approaches to disability, as they are understood based on personal, cultural, and historical contexts. Two reviewers will use Covidence software (Cochrane) to remove duplicates, screen articles, record the step-by-step selection process, and extract data from the included articles. We will follow the PRISMA-ScR (Preferred Reporting Items for Systematic Reviews and Meta-Analysis extension for Scoping Reviews) guidelines. We will present the findings in tables, charts, narrative summaries, and through fuzzy cognitive mapping. We will contextualize the literature?s findings by comparing them with the stakeholders in Quebec and provide a discussion to explore potential solutions for the identified factors. Results: An initial limited search was conducted in January 2024. The study will be conducted in 2025. Publication of the results is expected in late 2025. Conclusions: We anticipate that the findings from the scoping review will be useful for professionals, researchers, policy makers, and Indigenous communities themselves interested in co-designing and implementing evidence-informed disability programs and services, which will prevent mismatches between the programs and the sociocultural context. We will disseminate the results of this review through workshops with the participating communities, direct engagement with relevant local stakeholders, and through conference presentations and publications in scientific journals. Trial Registration: OSF Registries osf.io/9rzkx; https://osf.io/9rzkx International Registered Report Identifier (IRRID): DERR1-10.2196/57590 UR - https://www.researchprotocols.org/2025/1/e57590 UR - http://dx.doi.org/10.2196/57590 UR - http://www.ncbi.nlm.nih.gov/pubmed/ ID - info:doi/10.2196/57590 ER - TY - JOUR AU - Cyuzuzo, Callixte AU - Dukuzimana, Josee Marie AU - Muhire, Clement AU - Sheldon Ames, Mathew AU - Ngwakongnwi, Emmanuel PY - 2025/2/28 TI - Challenges to Rehabilitation Services in Sub-Saharan Africa From a User, Health System, and Service Provider Perspective: Scoping Review JO - JMIR Hum Factors SP - e58841 VL - 12 KW - challenges KW - users KW - health system KW - service providers KW - Sub-Saharan Africa KW - scoping review KW - rehabilitation service N2 - Background: Rehabilitation aims to restore and optimize the functioning of impaired systems for people with disabilities. It is an integral part of universal health coverage, and access to it is a human right. Objective: We aimed to identify the key challenges to rehabilitation services in Sub-Saharan Africa from a user, health system, and service provider perspective. Methods: This scoping review was conducted in accordance with the 5-stage framework proposed by Arksey and O?Malley. A comprehensive electronic search was run to identify published articles on rehabilitation services in Sub-Saharan Africa. Of the 131 articles retrieved, 83 articles were assessed for eligibility and 15 papers that met the inclusion criteria were considered. Results: The results show that people with disabilities in Sub-Saharan Africa face multifactorial challenges to access rehabilitation services. Poor access to rehabilitation services is associated with less attention given to rehabilitation by governments, which leads to less funding, negative cultural and social beliefs, fewer rehabilitation centers, poorly equipped rehabilitation units, failure of health systems, lack of training to rehabilitation practitioners, and logistical and financial constraints. This review also reveals that digital rehabilitation reduces costs and improves access to services in hard-to-reach geographical areas. However, digital rehabilitation faces challenges as well, including connectivity issues, inaccessibility to technology, a lack of technical knowledge, a lack of privacy, and ethical concerns. Conclusions: People with disabilities face multifactorial challenges to access rehabilitation services in Sub-Saharan Africa. It is therefore critical to address these challenges to optimize patients? health outcomes and offer better rehabilitation services. UR - https://humanfactors.jmir.org/2025/1/e58841 UR - http://dx.doi.org/10.2196/58841 ID - info:doi/10.2196/58841 ER - TY - JOUR AU - Rujeedawa, Tanzil AU - Karimi, Zahabiya AU - Wood, Helen AU - Sangeorzan, Irina AU - Smith, Roy AU - Sadler, Iwan AU - Martin-Moore, Esther AU - Gardner, Adrian AU - K Demetriades, Andreas AU - Sinha, Rohitashwa AU - Grahovac, Gordan AU - Bateman, Antony AU - Deakin, Naomi AU - Davies, Benjamin PY - 2025/2/24 TI - Evaluation of Financial Support Workshops for Patients Under State Pension Age With Degenerative Cervical Myelopathy: Survey Study JO - JMIR Form Res SP - e59032 VL - 9 KW - myelopathy KW - degenerative KW - spine KW - spinal KW - benefits KW - aid KW - financial KW - money KW - income KW - poverty KW - disability KW - disabled KW - finance KW - workshop KW - education KW - service KW - access KW - accessibility KW - navigate KW - confidence KW - government N2 - Background: Degenerative cervical myelopathy (DCM), a form of slow-motion and progressive spinal cord injury caused by spinal cord compression secondary to degenerative pathology, leads to high levels of disability and dependence, and may reduce quality of life. Myelopathy.org is the first global scientific and clinical charity for DCM, providing an accessible platform freely disseminating information relevant to the DCM diagnosis and its treatment. Significant transient and long-term change to earnings do occur and can thrust individuals into poverty. People with DCM face many challenges accessing state financial assistance. This can have a cumulative negative financial effect due to the association between DCM and low socioeconomic index. Financial support available to patients under pension age include Universal Credit (UC), a payment that helps with living costs, and Personal Independence Payment (PIP), which helps with extra living costs if someone has both a long-term health condition or disability and difficulty doing certain everyday tasks. Objective: This study aimed to assess if delivering workshops centered around access to financial support could assist people with DCM living in the United Kingdom. Methods: A series of 2 internet-based workshops was targeted at accessing financial support for English patients under the state pension age, with an anonymized survey delivered to participants after each session. The first session was on UC and the second on PIP. The survey consisted of a mixture of Likert scales, free text and yes or no answers. Survey responses were analyzed using descriptive statistics and free text answers underwent inductive thematic analysis. Results: The average rating on the use of UC was 9.00/10. Presession self-rated confidence levels were 5.11/10 rising to 8.00/10. The mean score of wanting further similar sessions was 8.67/10 with 56% (5/9) of participants wanting one-to-one sessions. For PIP, the average session use rating was 10/10. Presession self-rated confidence levels were 4.43/10 rising to 9.57/10. The mean score of wanting further similar sessions was 8.71/10, with 43% (3/7) of participants wanting one-to-one sessions . Following inductive thematic analysis, themes regarding the usefulness of such sessions and the challenges to accessing financial support emerged. One participant gave negative feedback, which included the length of the session and perceived problems around confidentiality and data protection. Conclusions: The pilot series was largely perceived as a success, with participants finding them useful and increasing their self-rated confidence in navigating the UK financial support system. Given the small sample size, it is hard to predict the success of future sessions. Finally, given that the hurdles in accessing financial support extend beyond DCM, such workshops may be relevant to other organizations. UR - https://formative.jmir.org/2025/1/e59032 UR - http://dx.doi.org/10.2196/59032 ID - info:doi/10.2196/59032 ER - TY - JOUR AU - Makhija, Deepa AU - Mata, Sunita AU - Sharma, Abha AU - Kachare, Kalpana AU - Manathottathil, Aparna AU - Jain, Seema AU - Jameela, Sophia AU - Rao, Chandrasekhara Bhogavalli AU - Rana, Rakesh AU - Tripathi, Arunabh AU - Rana, Kiran AU - Joshi, Vandana AU - Singh, Anukampa AU - Srikanth, Narayanam AU - Acharya, Rabinarayan PY - 2025/2/18 TI - Effectiveness of Composite Ayurveda Regimen in a Black Box Design for the Management of Rheumatoid Arthritis: Protocol of a Single Arm, Community-Based Study JO - JMIR Res Protoc SP - e57918 VL - 14 KW - rheumatoid arthritis KW - Amavata KW - Ayush-SG (coded drug) KW - Rasnasaptak Kashaya N2 - Background: Rheumatoid arthritis (RA) is an autoimmune disease that affects joints and can have extra-articular manifestations. RA usually tends to be progressive and leads to substantial health care burdens, both in terms of disability and economic costs. Despite the various treatment modalities available, there is still an urgent need for safe and effective medicine based on the pattern of disease presentation. The increasing interest in complementary and alternative medicine has created a demand for extensive research in this area. Objective: This clinical study is designed to evaluate the effectiveness and tolerability of a composite Ayurveda regimen in RA. Methods: The study is a single-arm (pre-post design), community-based interventional study with a black box design being conducted at 6 study centers. A total of 240 participants aged between 18 and 65 years, diagnosed with RA as per the 2010 American College of Rheumatology and the European League Against Rheumatism criteria are recruited as per the selection criteria. All the participants received Ayush-SG and Rasnasaptak Kashaya for 84 days along with customized treatment as per the disease presentation and associated complaints. The outcome measures include the change in disease activity score (DAS)-28 with erythrocyte sedimentation rate, disease-specific biochemical and inflammatory markers, Disability Index score, change in the participant?s assessment of pain and frequency of use of conventional analgesics or nonsteroidal anti-inflammatory drugs from baseline. The tolerability of interventions is assessed through the occurrence of adverse events. Categorical variables will be analyzed with McNemar chi-square test, and continuous variables will be assessed using the paired t test or Wilcoxon test for pre-post assessment. The level of significance will be 5%. Results: The recruitment of participants was initiated in December 2023. The participant recruitment was completed in March 2024 and out of 240 participants enrolled, 222 (92.5%) completed the study up to the last follow-up. Data verification, compilation, and analysis are under process. After data analysis, the study?s findings will be published in a peer-reviewed journal. Conclusions: This interventional study that incorporates the black box approach may provide a strong framework for managing RA. This design is a more reliable method for evaluating the effectiveness and tolerability of the composite Ayurveda regimen in RA. Trial Registration: Clinical Trial Registry-India CTRI/2023/06/054203; https://tinyurl.com/4prvwr6z International Registered Report Identifier (IRRID): DERR1-10.2196/57918 UR - https://www.researchprotocols.org/2025/1/e57918 UR - http://dx.doi.org/10.2196/57918 UR - http://www.ncbi.nlm.nih.gov/pubmed/ ID - info:doi/10.2196/57918 ER - TY - JOUR AU - Shin, Yoomi AU - Park, Ju Eun AU - Lee, Anna PY - 2025/1/17 TI - Early Intervention for Children With Developmental Disabilities and Their Families via Telehealth: Systematic Review JO - J Med Internet Res SP - e66442 VL - 27 KW - developmental disabilities KW - developmental delay KW - early intervention KW - telehealth KW - digital intervention KW - autistic spectrum disorder KW - cerebral palsy KW - family-centered care KW - multidisciplinary care KW - systematic review N2 - Background: Early intervention during the first 3 years of life is crucial for children with developmental disabilities to optimize developmental outcomes. However, access to such services is often limited by geographical distance and resource constraints. Telehealth can be part of a solution for overcoming these barriers, enabling the delivery of early intervention services. However, a comprehensive understanding of the efficacy and implementation of telehealth in early interventions remains elusive, particularly for children aged 0-3 years. Objective: This systematic review aims to synthesize existing research on the effectiveness and implementation of telehealth interventions in infants and toddlers (aged 0?3 years) who are at risk of or diagnosed with developmental disabilities. The primary objective of the study is to evaluate the ways that telehealth compares to conventional in-person interventions in improving developmental outcomes for children and supporting family well-being. Methods: A systematic search was conducted of 4 electronic databases (PubMed, Embase, CINAHL, and Web of Science), focusing on studies published between 2010 and 2024. The inclusion criteria were studies involving telehealth interventions for children aged 0-3 years who were at high risk or had developmental disabilities, which involved active interactions between the providers and the families. Study quality was assessed using the mixed methods appraisal tool, and a narrative synthesis was used to analyze the data. Results: Eighteen studies met the inclusion criteria: 12 single-case designs, 4 randomized controlled trials, and 2 nonequivalent control group designs. All studies involved caregiver-child dyads, with child ages ranging from 5 to 37 months and having or at risk of autistic spectrum disorder (n=10, 56%), cerebral palsy (n=4, 22%), and other conditions (n=4, 22%). Synchronous videoconferencing was the primary modality for caregiver training and coaching (n=17, 94%) while 1 intervention used an Internet of Things system. Outcomes were identified in child communication (n=9, 50%), physical (n=6, 33%), social or emotional (n=6, 33%), and adaptive behavior (n=4, 22%), as well as caregiver implementation (n=12, 66%). Telehealth demonstrated comparable or superior effectiveness to traditional in-person methods in 2 studies. However, the focus on specific conditions and limited research on cognitive development were notable gaps. Conclusions: Telehealth can be a viable alternative to traditional in-person early interventions for young children who have developmental disabilities and their families. It enhances accessibility and interactions between families and providers at a distance while promoting family-centered care. Challenges exist, including those of technological literacy, and the lack of research on cognitive outcomes must be addressed. Future work should explore more comprehensive interventions, including multidisciplinary approaches and expanded family outcomes, to solidify the role that telehealth plays in early intervention. Trial Registration: PROSPERO CRD42024551286; https://www.crd.york.ac.uk/prospero/display_record.php?RecordID=551286 UR - https://www.jmir.org/2025/1/e66442 UR - http://dx.doi.org/10.2196/66442 UR - http://www.ncbi.nlm.nih.gov/pubmed/ ID - info:doi/10.2196/66442 ER - TY - JOUR AU - Ramos, Aurélien AU - Boisvert, Maxence AU - Traverse, Elodie AU - Levac, Danielle AU - Lemay, Martin AU - Demers, Marika AU - Bordeleau, Martine AU - Ruest, Sarah-Maude AU - Périnet-Lacroix, Roxanne AU - Best, L. Krista AU - Robert, T. Maxime PY - 2025/1/17 TI - Bridging Needs and Expectations of Individuals With Physical Disabilities and Community Services Stakeholders for the Cocreation of an Adapted Physical Activity Platform in Virtual Reality: Qualitative Study JO - JMIR Serious Games SP - e59704 VL - 13 KW - virtual reality KW - physical activity KW - community organizations KW - accessibility KW - physical disability N2 - Background: Physical activity supports the health and well-being of individuals with physical disabilities. Despite the significance of engaging in physical activity, barriers faced by individuals with disabilities, such as limited access to adapted facilities and lack of transportation, can restrict their participation. Community organizations play a role in addressing these challenges, but virtual reality (VR) also offers a way to diversify adapted activities. In some situations, VR can help overcome the resource limitations of organizations by providing accessible, engaging, and highly personalized options for physical activity. Objective: The aim of this study was to explore the needs and expectations of individuals with physical disabilities and their interventionists for the use of a VR physical activity platform in a community organization. Methods: A descriptive qualitative study was conducted using semistructured interviews with individuals with physical disabilities and their interventionists, all associated with a nonprofit organization promoting physical activity among people with disabilities. Data were analyzed using an inductive thematic approach. Results: In total, 15 participants, including 8 people with physical disabilities and 7 interventionists, were interviewed. Through this discussion, we gained insights into the everyday challenges faced by individuals with disabilities and identified priorities for community organizations. Subsequently, we discussed key considerations for using VR, including adapting activities, the possibility of fostering a more positive perception of physical activity, and harnessing the potential of VR to improve access to physical activity. We also discussed the importance of supporting personal goals and creating inclusive experiences while recognizing challenges such as technical difficulties and connectivity issues. Conclusions: By exploring the needs and expectations regarding VR technology from individuals with physical disabilities and their interventionists, this study provided essential insights for integrating immersive and nonimmersive VR into community organizations, informing next steps for the design of adapted physical activities in VR. UR - https://games.jmir.org/2025/1/e59704 UR - http://dx.doi.org/10.2196/59704 ID - info:doi/10.2196/59704 ER - TY - JOUR AU - Kim, Yumi AU - Rimmer, H. James AU - Lai, Byron AU - Oster, Robert AU - Cowan, Rachel AU - Young, Hui-Ju AU - Fisher, Gordon AU - Kim, Younguk AU - Giannone, John AU - Wilroy, D. Jereme PY - 2025/1/15 TI - Cardiometabolic Health Intervention Using Music and Exercise (CHIME) Delivered via Telehealth to Wheelchair Users: Protocol for a Randomized Controlled Trial JO - JMIR Res Protoc SP - e57423 VL - 14 KW - exercise KW - physical activity KW - wheelchair user KW - telehealth KW - disability N2 - Background: Wheelchair users live predominantly sedentary lifestyles and have a substantially higher risk for cardiometabolic disease and mortality compared to people without disabilities. Exercise training has been found to be effective in improving cardiometabolic health (CMH) outcomes among people without disabilities, but research on wheelchair users is limited and of poor quality. Objective: The primary aim of this study is to examine the immediate and sustained effects of a 24-week, telehealth, movement-to-music cardiovascular (M2M-C) exercise program on core indicators of CMH among adult wheelchair users compared to an active control group. The secondary aim is to explore the beneficial effects of M2M-C exercises on cardiovascular capacity, physical activity, and quality of life. Intervention components include tailored exercises and remote performance monitoring, delivered via live videoconference training by a telecoach and asynchronous videos. Methods: This study?s design is a parallel-arm randomized controlled trial enrolling 132 physically inactive adult wheelchair users with poor cardiometabolic profiles. The M2M-C intervention group involves 24 weeks of virtual live and monitored home exercise training (3×/wk, 15-40 min/session), followed by a 12-week maintenance period where participants have access to an online media library of exercise videos. The control group involves 36 weeks of self-guided exercise through access to a media library of exercise videos, including videos for range of motion, muscle strength, and balance. The primary outcomes are cardiometabolic indicators of health, and assessors are blinded. Results: Recruitment procedures started in January 2024 with the first participant enrolled on March 18, 2024. All data are anticipated to be collected by November 2027, and the main results of the trial are anticipated to be published by February 2028. Secondary analyses of data will be subsequently published. A total of 16 participants have been recruited as of paper submission. Conclusions: The knowledge obtained from this trial will provide evidence to inform exercise prescriptions aimed at improving CMH among adult wheelchair users. Trial Registration: ClinicalTrials.gov NCT05606432; https://clinicaltrials.gov/study/NCT05606432 International Registered Report Identifier (IRRID): DERR1-10.2196/57423 UR - https://www.researchprotocols.org/2025/1/e57423 UR - http://dx.doi.org/10.2196/57423 UR - http://www.ncbi.nlm.nih.gov/pubmed/ ID - info:doi/10.2196/57423 ER - TY - JOUR AU - Hadar Souval, Dorit AU - Haber, Yuval AU - Tal, Amir AU - Simon, Tomer AU - Elyoseph, Tal AU - Elyoseph, Zohar PY - 2025/1/15 TI - Transforming Perceptions: Exploring the Multifaceted Potential of Generative AI for People With Cognitive Disabilities JO - JMIR Neurotech SP - e64182 VL - 4 KW - generative artificial intelligence KW - cognitive disability KW - social participation KW - AI ethics KW - assistive technology KW - cognitive disorder KW - societal barriers KW - social inclusion KW - disability study KW - social mirror KW - cognitive partner KW - empowerment KW - user involvement KW - GenAI KW - artificial intelligence KW - neurotechnology KW - neuroinformatics KW - digital health KW - health informatics KW - neuroscience KW - mental health KW - computer science KW - machine learning N2 - Background: The emergence of generative artificial intelligence (GenAI) presents unprecedented opportunities to redefine conceptions of personhood and cognitive disability, potentially enhancing the inclusion and participation of individuals with cognitive disabilities in society. Objective: We aim to explore the transformative potential of GenAI in reshaping perceptions of cognitive disability, dismantling societal barriers, and promoting social participation for individuals with cognitive disabilities. Methods: This study is a critical review of current literature in disability studies, artificial intelligence (AI) ethics, and computer science, integrating insights from disability theories and the philosophy of technology. The analysis focused on 2 key aspects: GenAI as a social mirror reflecting societal values and biases, and GenAI as a cognitive partner for individuals with cognitive disabilities. Results: This paper proposes a theoretical framework for understanding the impact of GenAI on perceptions of cognitive disability. It introduces the concepts of GenAI as a ?social mirror? that reflects and potentially amplifies societal biases and as a ?cognitive copilot? providing personalized assistance in daily tasks, social interactions, and environmental navigation. This paper also presents a novel protocol for developing AI systems tailored to the needs of individuals with cognitive disabilities, emphasizing user involvement, ethical considerations, and the need to address both the opportunities and challenges posed by GenAI. Conclusions: Although GenAI has great potential for promoting the inclusion and empowerment of individuals with cognitive disabilities, realizing this potential requires a change in societal attitudes and development practices. This paper calls for interdisciplinary collaboration and close partnership with the disability community in the development and implementation of GenAI technologies. Realizing the potential of GenAI for promoting the inclusion and empowerment of individuals with cognitive disabilities requires a multifaceted approach. This involves a shift in societal attitudes, inclusive AI development practices that prioritize the needs and perspectives of the disability community, and ongoing interdisciplinary collaboration. This paper emphasizes the importance of proceeding with caution, recognizing the ethical complexities and potential risks alongside the transformative possibilities of GenAI technology. UR - https://neuro.jmir.org/2025/1/e64182 UR - http://dx.doi.org/10.2196/64182 ID - info:doi/10.2196/64182 ER - TY - JOUR AU - Sørensen, Linda AU - Sagen Johannesen, Tomas Dag AU - Melkas, Helinä AU - Johnsen, Mari Hege PY - 2025/1/13 TI - User Acceptance of a Home Robotic Assistant for Individuals With Physical Disabilities: Explorative Qualitative Study JO - JMIR Rehabil Assist Technol SP - e63641 VL - 12 KW - physical artificial intelligence KW - physical AI KW - health care robotics KW - assistive technology KW - content analysis KW - qualitative KW - health care KW - robotics KW - assistive KW - robot interaction KW - physical disabilities KW - readiness KW - amputations N2 - Background: Health care is shifting toward 5 proactive approaches: personalized, participatory, preventive, predictive, and precision-focused services (P5 medicine). This patient-centered care leverages technologies such as artificial intelligence (AI)?powered robots, which can personalize and enhance services for users with disabilities. These advancements are crucial given the World Health Organization?s projection of a global shortage of up to 10 million health care workers by 2030. Objective: This study aimed to investigate the acceptance of a humanoid assistive robot among users with physical disabilities during (1) AI-powered (using a Wizard of Oz methodology) robotic performance of predefined personalized assistance tasks and (2) operator-controlled robotic performance (simulated distant service). Methods: An explorative qualitative design was used, involving user testing in a simulated home environment and individual interviews. Directed content analysis was based on the Almere model and the model of domestic social robot acceptance. Results: Nine participants with physical disabilities aged 27 to 78 years engaged in robot interactions. They shared their perceptions across 7 acceptance concepts: hedonic attitudes, utilitarian attitudes, personal norms, social norms, control beliefs, facilitating conditions, and intention to use. Participants valued the robot?s usefulness for practical services but not for personal care. They preferred automation but accepted remote control of the robot for some tasks. Privacy concerns were mixed. Conclusions: This study highlights the complex interplay of functional expectations, technological readiness, and personal and societal norms affecting the acceptance of physically assistive robots. Participants were generally positive about robotic assistance as it increases independence and lessens the need for human caregivers, although they acknowledged some current shortcomings. They were open to trying more home testing if future robots could perform most tasks autonomously. AI-powered robots offer new possibilities for creating more adaptable and personalized assistive technologies, potentially enhancing their effectiveness and viability for individuals with disabilities. UR - https://rehab.jmir.org/2025/1/e63641 UR - http://dx.doi.org/10.2196/63641 UR - http://www.ncbi.nlm.nih.gov/pubmed/39805579 ID - info:doi/10.2196/63641 ER - TY - JOUR AU - Atigossou, Gbètoho Orthelo Léonel AU - Capo-chichi, Martial Sègbédji Joseph AU - Mitcha?, Mahutchegnon Penielle AU - Honado, S. Aristide PY - 2024/12/9 TI - Evaluating the Impact of Assistive Technologies on Individuals With Disabilities in Benin: Protocol for a Cross-Sectional Study JO - JMIR Res Protoc SP - e60869 VL - 13 KW - assistive technologies KW - assistive technology assessment KW - individuals with disabilities KW - disabilities KW - cross-sectional study KW - well-being KW - quality of life KW - effects KW - Benin N2 - Background: A significant proportion of individuals with disabilities in resource-limited countries require at least 1 assistive technology (AT) device to enhance their functioning and autonomy. However, there is limited evidence regarding the actual needs of AT users in these regions concerning the adequacy of ATs. Objective: This research aims to assess the effects of ATs on AT users in a resource-limited country. Methods: A cross-sectional study will be conducted in Benin, a sub-Saharan African country, using a nonprobability sample of AT users. Participants will undergo evaluation using standardized tools to assess their psycho-affective status, satisfaction with ATs, perception of the functional effects of ATs, well-being, and quality of life. Additionally, a survey based on the World Health Organization's rATA (rapid assistive technology assessment) tool will be conducted to gather sociodemographic and other data concerning the use of ATs. The findings will be organized and discussed using the Consortium on Assistive Technology Outcomes Research taxonomy, focusing on aspects related to the effectiveness and social significance of ATs, as well as the subjective well-being of AT users. Results: The process of identifying potential participants began in August 2024, and data collection is scheduled to start in January 2025 and continue for 12 months. Conclusions: This research will provide an overview of the effects induced by the use of ATs, as well as describe the profile of AT users in Benin. To our knowledge, this will be the first study to examine the impact of ATs in Benin. It will therefore make a significant contribution to the existing data on the use of ATs in sub-Saharan Africa. International Registered Report Identifier (IRRID): PRR1-10.2196/60869 UR - https://www.researchprotocols.org/2024/1/e60869 UR - http://dx.doi.org/10.2196/60869 UR - http://www.ncbi.nlm.nih.gov/pubmed/ ID - info:doi/10.2196/60869 ER - TY - JOUR AU - Lancioni, E. Giulio AU - Alberti, Gloria AU - Filippini, Chiara AU - Singh, N. Nirbhay AU - O?Reilly, F. Mark AU - Sigafoos, Jeff AU - Orlando, Isabella AU - Desideri, Lorenzo PY - 2024/11/27 TI - A Technology System to Help People With Intellectual Disability and Blindness Find Room Destinations During Indoor Traveling: Case Series Study JO - JMIR Rehabil Assist Technol SP - e65680 VL - 11 KW - barcode reader KW - barcode KW - blindness KW - intellectual disability KW - indoor traveling KW - indoor travel KW - digital health KW - travel KW - navigation KW - wayfinding KW - patient care KW - patient support KW - mobile health KW - patient assessment KW - health intervention KW - user engagement KW - technology use KW - telerehabilitation KW - rehabilitation KW - disability KW - support tools KW - mobility KW - orientation KW - mobile phone N2 - Background: People with severe or profound intellectual disability and visual impairment tend to have serious problems in orientation and mobility and need assistance for their indoor traveling. The use of technology solutions may be critically important to help them curb those problems and achieve a level of independence. Objective: This study aimed to assess a new technology system to help people with severe to profound intellectual disability and blindness find room destinations during indoor traveling. Methods: A total of 7 adults were included in the study. The technology system entailed a barcode reader, a series of barcodes marking the room entrances, a smartphone, and a special app that controlled the presentation of different messages (instructions) for the participants. The messages varied depending on whether the participants were (1) in an area between room entrances, (2) in correspondence with a room entrance to bypass, or (3) in correspondence with a room entrance representing the destination to enter. The intervention with the technology system was implemented according to a nonconcurrent multiple baseline design across participants. Sessions included 7 traveling trials, in each of which the participants were to reach and enter a specific room (1 of the 7 or 9 available) to deliver an object they had carried (transported) during their traveling. Results: The participants? mean frequency of traveling trials completed correctly was between zero and 2 per session during the baseline (without the system). Their mean frequency increased to between about 6 and nearly 7 per session during the intervention (with the system). Conclusions: The findings suggest that the new technology system might be a useful support tool for people with severe to profound intellectual disability and blindness. UR - https://rehab.jmir.org/2024/1/e65680 UR - http://dx.doi.org/10.2196/65680 UR - http://www.ncbi.nlm.nih.gov/pubmed/39602792 ID - info:doi/10.2196/65680 ER - TY - JOUR AU - Lange-Drenth, Lukas AU - Schulz, Holger AU - Suck, Isabell AU - Bleich, Christiane PY - 2024/11/8 TI - Barriers, Facilitators, and Requirements for a Telerehabilitation Aftercare Program for Patients After Occupational Injuries: Semistructured Interviews With Key Stakeholders JO - JMIR Form Res SP - e51865 VL - 8 KW - telerehabilitation KW - rehabilitation KW - eHealth development KW - value specification KW - stakeholder participation KW - occupational injuries KW - vocational rehabilitation KW - aftercare KW - mobile phone N2 - Background: Patients with occupational injuries often receive multidisciplinary rehabilitation for a rapid return to work. Rehabilitation aftercare programs give patients the opportunity to help patients apply the progress they have made during the rehabilitation to their everyday activities. Telerehabilitation aftercare programs can help reduce barriers, such as lack of time due to other commitments, because they can be used regardless of time or location. Careful identification of barriers, facilitators, and design requirements with key stakeholders is a critical step in developing a telerehabilitation aftercare program. Objective: This study aims to identify barriers, facilitators, and design requirements for a future telerehabilitation aftercare program for patients with occupational injuries from the perspective of the key stakeholders. Methods: We used a literature review and expert recommendations to identify key stakeholders. We conducted semistructured interviews in person and via real-time video calls with 27 key stakeholders to collect data. Interviews were transcribed verbatim, and thematic analysis was applied. We selected key stakeholder statements about facilitators and barriers and categorized them as individual, technical, environmental, and organizational facilitators and barriers. We identified expressions that captured aspects that the telerehabilitation aftercare program should fulfill and clustered them into attributes and overarching values. We translated the attributes into one or more requirements and grouped them into content, functional, service, user experience, and work context requirements. Results: The key stakeholders identified can be grouped into the following categories: patients, health care professionals, administrative personnel, and members of the telerehabilitation program design and development team. The most frequently reported facilitators of a future telerehabilitation aftercare program were time savings for patients, high motivation of the patients to participate in telerehabilitation aftercare program, high usability of the program, and regular in-person therapy meetings during the telerehabilitation aftercare program. The most frequently reported barriers were low digital affinity and skills of the patients and personnel, patients? lack of trust and acceptance of the telerehabilitation aftercare program, slow internet speed, program functionality problems (eg, application crashes or freezes), and inability of telerehabilitation to deliver certain elements of in-person rehabilitation aftercare such as monitoring exercise performance. In our study, the most common design requirements were reducing barriers and implementing facilitators. The 2 most frequently discussed overarching values were tailoring of telerehabilitation, such as a tailored exercise plan and tailored injury-related information, and social interaction, such as real-time psychotherapy and digital and in-person rehabilitation aftercare in a blended care approach. Conclusions: Key stakeholders reported on facilitators, barriers, and design requirements that should be considered throughout the development process. Tailoring telerehabilitation content was the key value for stakeholders to ensure the program could meet the needs of patients with different types of occupational injuries. UR - https://formative.jmir.org/2024/1/e51865 UR - http://dx.doi.org/10.2196/51865 UR - http://www.ncbi.nlm.nih.gov/pubmed/ ID - info:doi/10.2196/51865 ER - TY - JOUR AU - Menschik, Christian AU - Kunze, Christophe AU - Renner, Gregor AU - Etges, Theresa PY - 2024/11/5 TI - Mainstream Technologies in Facilities for People With Intellectual Disabilities: Multiple-Methods Study Using the Nonadoption, Abandonment, Scale-Up, Spread, and Sustainability Framework JO - JMIR Rehabil Assist Technol SP - e59360 VL - 11 KW - intellectual disabilities KW - mainstream technology KW - technology adoption KW - technology implementation KW - NASSS KW - digital competencies KW - facility for people with disabilities KW - mobile phone N2 - Background: People with intellectual disabilities in residential or outpatient facilities for people with disabilities run the risk of being digitally excluded by not having opportunities for taking advantage of digitalization possibilities. Objective: We aimed to investigate how disability caregivers and managers describe barriers and facilitating factors to implement and adopt mainstream technology for people with intellectual disabilities in residential or outpatient facilities and how the competencies and capabilities of the caregivers are assessed in the process. Methods: For this reason, we conducted a multiple-methods study applying the nonadoption, abandonment, scale-up, spread, and sustainability framework. Results: As a result, we identified barriers and facilitators across the nonadoption, abandonment, scale-up, spread, and sustainability framework domains: (1) condition?people with intellectual disabilities are a diverse group, where the individual condition of the person and, for example, their communication skills were seen as a prerequisite for implementing mainstream technologies; (2) technology?the extent to which mainstream technology fits the individual needs and demands contributed to the implementation process; (3) value proposition?communication was seen as a life area where mainstream technology can add value; (4) adopters?the caregivers needed competencies and capabilities to accompany their care recipients? technology use; (5) organization?missing legal regulations and lack of personnel resources were described as barriers; (6) wider context?funding opportunities were seen as unclear in disability services as mainstream technologies could not be financed as participation benefits; (7) embedding and adaptation over time?the COVID-19 pandemic forced facilities to become digitalized to some extent. Conclusions: The disability services investigated were still in need of standardized procedures to promote the digital participation of their residents. UR - https://rehab.jmir.org/2024/1/e59360 UR - http://dx.doi.org/10.2196/59360 UR - http://www.ncbi.nlm.nih.gov/pubmed/ ID - info:doi/10.2196/59360 ER - TY - JOUR AU - Mubarik, Sumaira AU - Naeem, Shafaq AU - Shen, Hui AU - Mubarak, Rabia AU - Luo, Lisha AU - Hussain, Rija Syeda AU - Hak, Eelko AU - Yu, Chuanhua AU - Liu, Xiaoxue PY - 2024/10/17 TI - Population-Level Distribution, Risk Factors, and Burden of Mortality and Disability-Adjusted Life Years Attributable to Major Noncommunicable Diseases in Western Europe (1990-2021): Ecological Analysis JO - JMIR Public Health Surveill SP - e57840 VL - 10 KW - mortality KW - smoking KW - Western Europe KW - CVDs KW - cardiovascular disease KW - HDI KW - Human Development Index KW - neoplasms KW - cancer KW - DALYs KW - disability-adjusted life years N2 - Background: Cardiovascular diseases (CVDs) and neoplasms are leading causes of mortality worldwide. Objective: This study aims to provide a comprehensive analysis of the mortality burden and disability-adjusted life years (DALYs) attributable to CVDs and neoplasms in Western Europe, investigate associated risk factors, and identify regional disparities. Additionally, the study evaluates the effectiveness of the Action Plan for the Prevention and Control of Non-Communicable Diseases (NCDs) in promoting healthier lives in the region. Methods: The study collected data on mortality and DALYs due to CVDs and cancers from 24 Western European countries using the Global Burden of Disease Study 2021. The analysis explored age, sex, and country-specific patterns, as well as risk factors contributing to these deaths. Additionally, the study examined time trends by calculating the annual percent change in mortality rates from 1990 to 2021 by region and cause. Results: In 2021, CVDs and neoplasms accounted for 27.8% and 27.1% of total deaths in Western Europe, with age-standardized death rates of 106.8 and 125.8 per 100,000, respectively. The top two CVDs in this region were ischemic heart disease and stroke, with age-standardized death rates of 47.27 (95% uncertainty interval [UI] 50.42-41.45) and 27.06 (95% UI 29.17-23.00), respectively. Similarly, the top two neoplasms were lung cancer and colorectal cancer, with age-standardized death rates of 26.4 (95% UI 27.69-24.47) and 15.1 (95% UI 16.25-13.53), respectively. Between 1990 and 2021, CVD mortality rates decreased by 61.9%, while cancer rates decreased by 28.27%. Finland had the highest CVD burden (39.5%), and Monaco had the highest rate of cancer-related deaths (34.8%). Gender differences were observed, with males experiencing a higher burden of both CVDs and cancer. Older individuals were also more at risk. Smoking had a stronger impact on CVD mortality and DALYs in males, while a higher Human Development Index was associated with increased cancer deaths and DALYs in females. Conclusions: The study findings highlight the substantial burden of NCDs, particularly CVDs and cancer, in Western Europe. This underscores the critical need for targeted interventions and effective implementation of the Action Plan for the Prevention and Control of NCDs to achieve the goal of ensuring healthy lives for all. UR - https://publichealth.jmir.org/2024/1/e57840 UR - http://dx.doi.org/10.2196/57840 ID - info:doi/10.2196/57840 ER - TY - JOUR AU - Barría, Patricio AU - Andrade, Asterio AU - Gomez-Vargas, Daniel AU - Yelincic, Alejandro AU - Roberti, Flavio AU - Bahamonde, Eduardo AU - Aguilar, Rolando AU - Cordova, Bessie PY - 2024/10/16 TI - Multidisciplinary Home-Based Rehabilitation Program for Individuals With Disabilities: Longitudinal Observational Study JO - JMIR Rehabil Assist Technol SP - e59915 VL - 11 KW - rehabilitation KW - home-based therapy KW - physical therapy KW - psychological therapy KW - home physiotherapy KW - disabilities KW - occupational therapy KW - personalized care KW - patient care KW - motor disorder KW - mood disorder KW - motor function N2 - Background: Disability affects a significant portion of the global population nowadays, necessitating innovative approaches to access rehabilitation processes. Home-based rehabilitation has emerged as a beneficial approach, offering comfort and context-specific therapy. Objective: This study aims to evaluate the impact of a multidisciplinary home-based rehabilitation program for individuals with moderate neuromusculoskeletal disabilities in terms of motor function and mood. Methods: A total of 270 participants with median age of 66 (IQR 20-98) years were recruited from the National Disability Registry of Chile. The intervention involved a multidisciplinary team composed of 49 health care professionals providing personalized treatment plans over 4 months (32 sessions for physical therapy, 8 sessions for occupational therapy, 4 sessions for nutrition, 8 sessions for psychology, and 4 sessions for nursing and podiatry). This program also included 2 medical evaluations (at the beginning and the end) to monitor clinical progress in terms of motor function and mental health, using the Berg Balance Scale and Beck Depression Inventory, respectively. Results: The home-based rehabilitation program showed significant improvements (P<.001) in motor function and balance with a reduction in fall risk. Specifically, the Berg Balance Scale score decreased close to 15% after the home-based rehabilitation program for all enrolled participants. On the other hand, depression levels showed no significant changes (P=.27), with percentages of variation less than 8% between the 2 assessed conditions. In this sense, participants remained with the same mild depression level (14 of 63) concerning the Beck Depression Inventory score. Conclusions: This study concludes that personalized home-based rehabilitation programs are effective in enhancing motor function and balance, particularly in individuals with neurological conditions. On the other hand, the findings in terms of mood advocate for further exploration of psychological support within such programs to enhance overall patient well-being. Trial Registration: ClinicalTrials.gov NCT06537791; https://clinicaltrials.gov/study/NCT06537791 UR - https://rehab.jmir.org/2024/1/e59915 UR - http://dx.doi.org/10.2196/59915 UR - http://www.ncbi.nlm.nih.gov/pubmed/39412860 ID - info:doi/10.2196/59915 ER - TY - JOUR AU - Mahmoudi, Ebrahim AU - Yejong Yoo, Paul AU - Chandra, Ananya AU - Cardoso, Roberta AU - Denner Dos Santos, Carlos AU - Majnemer, Annette AU - Shikako, Keiko PY - 2024/9/6 TI - Gamification in Mobile Apps for Children With Disabilities: Scoping Review JO - JMIR Serious Games SP - e49029 VL - 12 KW - mobile health KW - mHealth KW - gamification KW - children with disabilities KW - mobile phone N2 - Background: Children with disabilities face numerous challenges in accessing health services. Mobile health is an emerging field that could significantly reduce health inequities by providing more accessible services. Many mobile apps incorporate gamification elements such as feedback, points, and stories to increase engagement and motivation; however, little is known about how gamification has been incorporated in mobile apps for children with disabilities. Objective: This scoping review aims to identify and synthesize the existing research evidence on the use of gamification in mobile apps for children with disabilities. Specifically, the objectives were to (1) identify the categories of these mobile apps (eg, treatment and educational) (2), describe the health-related outcomes they target, (3) assess the types and levels of gamification elements used within these apps, and (4) determine the reasons for incorporating gamification elements into mobile apps. Methods: We searched MEDLINE, PsycINFO, CINAHL, Embase, the ACM Digital Library, and IEEE Xplore databases to identify papers published between 2008 and 2023. Original empirical research studies reporting on gamified mobile apps for children with disabilities that implemented at least 1 gamification strategy or tactic were included. Studies investigating serious games or full-fledged games were excluded. Results: A total of 38 studies reporting on 32 unique gamified mobile apps were included. Findings showed that gamified apps focus on communication skills and oral health in children with autism spectrum disorder while also addressing self-management and academic skills for other disability groups. Gamified mobile apps have demonstrated potential benefits across different populations and conditions; however, there were mixed results regarding their impact. The gamification strategies included fun and playfulness (23/32, 72%), feedback on performance (17/32, 53%), and reinforcement (17/32, 53%) in more than half of apps, whereas social connectivity was used as a gamification strategy in only 4 (12%) mobile apps. There were 2 main reasons for integrating gamification elements into mobile apps described in 16 (42%) studies: increasing user engagement and motivation and enhancing intervention effects. Conclusions: This scoping review offers researchers a comprehensive review of the gamification elements currently used in mobile apps for the purposes of treatment, education, symptom management, and assessment for children with disabilities. In addition, it indicates that studies on certain disability groups and examinations of health-related outcomes have been neglected, highlighting the need for further investigations in these areas. Furthermore, research is needed to investigate the effectiveness of mobile-based gamification elements on health and health behavior outcomes, as well as the healthy development of children with disabilities. UR - https://games.jmir.org/2024/1/e49029 UR - http://dx.doi.org/10.2196/49029 UR - http://www.ncbi.nlm.nih.gov/pubmed/39240675 ID - info:doi/10.2196/49029 ER - TY - JOUR AU - Lancioni, E. Giulio AU - Singh, N. Nirbhay AU - O?Reilly, F. Mark AU - Sigafoos, Jeff AU - Alberti, Gloria AU - Orlando, Isabella AU - Chiariello, Valeria AU - Desideri, Lorenzo PY - 2024/6/12 TI - Enabling People With Intellectual and Sensory Disabilities to Trigger a Tablet?s Delivery of Task Instructions by Walking to the Tablet: Proof-of-Concept Study JO - JMIR Rehabil Assist Technol SP - e59315 VL - 11 KW - technology KW - tablet KW - task KW - instructions KW - intellectual disability, visual impairment, hearing impairment N2 - Background: People with intellectual and sensory or sensory-motor disabilities tend to have problems performing multistep tasks. To alleviate their problems, technological solutions have been developed that provide task-step instructions. Instructions are generally delivered at people?s request (eg, as they touch an area of a computer or tablet screen) or automatically, at preset intervals. Objective: This study carried out a preliminary assessment of a new tablet-based technology system that presented task-step instructions when participants with intellectual and sensory disabilities walked close to the tablet (ie, did not require participants to perform fine motor responses on the tablet screen). Methods: The system entailed a tablet and a wireless camera and was programmed to present instructions when participants approached the tablet, that is, when the camera positioned in front of the tablet detected them. Two instructions were available for each task step. One instruction concerned the object(s) that the participants were to collect, and the other instruction concerned the ?where? and ?how? the object(s) collected would need to be used. For 3 of the six participants, the two instructions were presented in succession, with the second instruction presented once the required object(s) had been collected. For the other 3 participants, the two instructions were presented simultaneously. Instructions consisted of pictorial representations combined with brief verbal phrases. The impact of the system was assessed for each of the 2 groups of participants using a nonconcurrent multiple baseline design across individuals. Results: All participants were successful in using the system. Their mean frequency of correct task steps was close to or above 11.5 for tasks including 12 steps. Their level of correct performance tended to be much lower during the baseline phase when they were to receive the task-step instructions from a regular tablet through scrolling responses. Conclusions: The findings, which need to be interpreted with caution given the preliminary nature of the study, suggest that the new tablet-based technology system might be useful for helping people with intellectual and sensory disabilities perform multistep tasks. UR - https://rehab.jmir.org/2024/1/e59315 UR - http://dx.doi.org/10.2196/59315 UR - http://www.ncbi.nlm.nih.gov/pubmed/38865701 ID - info:doi/10.2196/59315 ER - TY - JOUR AU - Munce, EP Sarah PY - 2024/4/22 TI - Introducing JMIR Rehabilitation and Assistive Technologies: A Venue for Publishing Interdisciplinary Research on the Development, Implementation, and Evaluation of Health Innovations and Emerging Technologies in the Field of Rehabilitation JO - JMIR Rehabil Assist Technol SP - e56348 VL - 11 KW - rehabilitation KW - assistive technologies KW - JMIR Rehabilitation and Assistive Technologies KW - digital KW - online UR - https://rehab.jmir.org/2024/1/e56348 UR - http://dx.doi.org/10.2196/56348 UR - http://www.ncbi.nlm.nih.gov/pubmed/38648632 ID - info:doi/10.2196/56348 ER - TY - JOUR AU - Bults, Marloes AU - van Leersum, Margaretha Catharina AU - Olthuis, Josef Theodorus Johannes AU - Siebrand, Egbert AU - Malik, Zohrah AU - Liu, Lili AU - Miguel-Cruz, Antonio AU - Jukema, Seerp Jan AU - den Ouden, Maria Marjolein Elisabeth PY - 2024/4/19 TI - Acceptance of a Digital Assistant (Anne4Care) for Older Adult Immigrants Living With Dementia: Qualitative Descriptive Study JO - JMIR Aging SP - e50219 VL - 7 KW - assistive technology KW - technology acceptance KW - immigrant KW - dementia KW - marginalized older adults N2 - Background: There is a need to develop and coordinate dementia care plans that use assistive technology for vulnerable groups such as immigrant populations. However, immigrant populations are seldom included in various stages of the development and implementation of assistive technology, which does not optimize technology acceptance. Objective: This study aims to gain an in-depth understanding of the acceptance of a digital personal assistant, called Anne4Care, by older adult immigrants living with dementia in their own homes. Methods: This study used a qualitative descriptive research design with naturalistic inquiry. A total of 13 older adults participated in this study. The participants were invited for 2 interviews. After an introduction of Anne4Care, the first interview examined the lives and needs of participants, their expectations, and previous experiences with assistive technology in daily life. Four months later, the second interview sought to understand facilitators and barriers, suggestions for modifications, and the role of health care professionals. Three semistructured interviews were conducted with health care professionals to examine the roles and challenges they experienced in the use and implementation of Anne4Care. Content analysis, using NVivo11, was performed on all transcripts. Results: All 13 participants had an immigration background. There were 10 male and 3 female participants, with ages ranging from 52 to 83 years. Participants were diagnosed with an early-stage form of dementia or acquired brain injury. None of the older adult participants knew or used digital assistive technology at the beginning. They obtained assistance from health care professionals and family caregivers who explained and set up the technology. Four themes were found to be critical aspects of the acceptance of the digital personal assistant Anne4Care: (1) use of Anne4Care, (2) positive aspects of Anne4Care, (3) challenges with Anne4Care, and (4) expectations. Assistance at first increased the burden on health care professionals and families. After the initial effort, most health care professionals and families experienced that Anne4Care reduced their tasks and stress. Contributions of Anne4Care included companionship, help with daily tasks, and opportunities to communicate in multiple languages. On the other hand, some participants expressed anxiety toward the use of Anne4Care. Furthermore, the platform required an internet connection at home and Anne4Care could not be used outside the home. Conclusions: Although older adult immigrants living with dementia had no previous experience with digital assistive technology specifically, the acceptance of the digital personal assistant, called Anne4Care, by older adult immigrants living with dementia was rather high. The digital assistant can be further developed to allow for interactive conversations and for use outside of one?s home. Participation of end users during various stages of the development, refinement, and implementation of health technology innovations is of utmost importance to maximize technology acceptance. UR - https://aging.jmir.org/2024/1/e50219 UR - http://dx.doi.org/10.2196/50219 UR - http://www.ncbi.nlm.nih.gov/pubmed/38639994 ID - info:doi/10.2196/50219 ER - TY - JOUR AU - Choi, Soyoung PY - 2024/4/10 TI - Comparison of Self-Tracking Health Practices, eHealth Literacy, and Subjective Well-Being Between College Students With and Without Disabilities: Cross-Sectional Survey JO - JMIR Form Res SP - e48783 VL - 8 KW - college students KW - personal health data KW - self-tracking KW - eHealth literacy KW - well-being KW - tracking KW - students KW - disability KW - cross-sectional survey KW - pediatric care KW - adult care KW - smartphone health app KW - application KW - literacy N2 - Background: College students with disabilities need to transition from pediatric-centered care to adult care. However, they may become overwhelmed by multiple responsibilities, such as academic activities, peer relationships, career preparation, job seeking, independent living, as well as managing their health and promoting healthy behaviors. Objective: As the use of smartphones and wearable devices for collecting personal health data becomes popular, this study aimed to compare the characteristics of self-tracking health practices between college students with disabilities and their counterparts. In addition, this study examined the relationships between disability status, self-tracking health practices, eHealth literacy, and subjective well-being among college students. Methods: The web-based questionnaire was designed using Qualtrics for the cross-sectional online survey. The survey data were collected from February 2023 to April 2023 and included responses from 702 participants. Results: More than 80% (563/702, 80.2%) of the respondents participated voluntarily in self-tracking health practices. College students with disabilities (n=83) showed significantly lower levels of eHealth literacy and subjective well-being compared with college students without disabilities (n=619). The group with disabilities reported significantly lower satisfaction (t411=?5.97, P<.001) and perceived efficacy (t411=?4.85, P<.001) when using smartphone health apps and wearable devices. Finally, the study identified a significant correlation between subjective well-being in college students and disability status (?=3.81, P<.001), self-tracking health practices (?=2.22, P=.03), and eHealth literacy (?=24.29, P<.001). Conclusions: Given the significant relationships among disability status, self-tracking health practices, eHealth literacy, and subjective well-being in college students, it is recommended to examine their ability to leverage digital technology for self-care. Offering learning opportunities to enhance eHealth literacy and self-tracking health strategies within campus environments could be a strategic approach to improve the quality of life and well-being of college students. UR - https://formative.jmir.org/2024/1/e48783 UR - http://dx.doi.org/10.2196/48783 UR - http://www.ncbi.nlm.nih.gov/pubmed/38598285 ID - info:doi/10.2196/48783 ER - TY - JOUR AU - Morrow, M. Melissa AU - Hughes, C. Lynne AU - Collins, M. Diane AU - Vos-Draper, L. Tamara PY - 2024/4/10 TI - Clinical Remote Monitoring of Individuals With Spinal Cord Injury at Risk for Pressure Injury Recurrence Using mHealth: Protocol for a Pilot, Pragmatic, Hybrid Implementation Trial JO - JMIR Res Protoc SP - e51849 VL - 13 KW - wheelchair user KW - seating and mobility KW - weight shift behavior KW - pressure injury KW - mobile phone N2 - Background: Pressure injuries are one of the most challenging secondary conditions for individuals with spinal cord injuries and related disorders (SCI/D) owing to inherent, lifelong risk factors that include a lack of sensory and motor function below the level of injury and reliance on a wheelchair for daily mobility, resulting in prolonged periods of sitting. Although many factors contribute to the development of pressure injuries, the pressure between the skin and a surface is always a factor and the development of injury is dependent on the magnitude and duration of the pressure. Clinically, broad recommendations for relieving pressure are used because we know very little about the unique day-to-day life patterns of the individual wheelchair user. Typically, it is after the occurrence of a pressure injury that the therapist will check equipment fit and the effectiveness of pressure offloading and ask about other surfaces they sit on in their home and community. This time-lapsed, largely self-reported data are fraught with recall bias and inaccuracies that the therapist incorporates into a plan of care. Objective: This study?s objective is to pilot-test the implementation and clinical effectiveness of a telehealth model of care combined with our mobile health (mHealth) Assisted Weight-Shift device for remote monitoring of factors related to maintaining skin health and wheelchair setup. Our overall hypothesis is that this study will result in an effective implementation plan, and the enhanced connected model of care using remote monitoring of pressure management will result in pilot-level, improved clinical outcomes for adults with spinal cord injury at high risk for pressure injury recurrence. Methods: For all aims, we will use a mixed methods design using an exploratory, sequential approach to include the strengths of both qualitative and quantitative data. For aims 1 and 2, we will iteratively collect qualitative data from therapists, patients with SCI/D, and other stakeholders. For aim 3, we will perform a hybrid effectiveness-implementation randomized controlled trial to pilot-test the intervention. The projected results include an iteratively developed and tested implementation plan that meets moderate to high levels of acceptability, feasibility, and appropriateness. Additionally, the pilot trial results are expected to show positive trends in relevant clinical outcomes related to reduced pressure injury incidence, recurrence, and improved healing when compared with the standard of care. Results: Currently, 6 participants have been recruited for our aim-1 qualitative study. Conclusions: This study will expand upon our previous study to move the Assisted Weight-Shift system into routine clinical care, which was a strong desire of adults with SCI/D for improved individualized care plans to prevent pressure injuries. The results of this study will guide the next steps in a full, hybrid effectiveness-implementation trial with the goal of improving care to prevent pressure injuries. International Registered Report Identifier (IRRID): DERR1-10.2196/51849 UR - https://www.researchprotocols.org/2024/1/e51849 UR - http://dx.doi.org/10.2196/51849 UR - http://www.ncbi.nlm.nih.gov/pubmed/38598267 ID - info:doi/10.2196/51849 ER - TY - JOUR AU - Adler, F. Rachel AU - Baez, Kevin AU - Morales, Paulina AU - Sotelo, Jocelyn AU - Victorson, David AU - Magasi, Susan PY - 2024/4/2 TI - Evaluating the Usability of an mHealth App for Empowering Cancer Survivors With Disabilities: Heuristic Evaluation and Usability Testing JO - JMIR Hum Factors SP - e51522 VL - 11 KW - mobile health KW - mHealth KW - apps KW - usability KW - cancer survivors KW - accessibility KW - disabilities KW - cancer KW - oncology KW - heuristics KW - empowerment KW - advocacy KW - mindfulness KW - problem-solving N2 - Background: More than 18 million cancer survivors are living in the United States. The effects of cancer and its treatments can have cognitive, psychological, physical, and social consequences that many survivors find incredibly disabling. Posttreatment support is often unavailable or underused, especially for survivors living with disabilities. This leaves them to deal with new obstacles and struggles on their own, oftentimes feeling lost during this transition. Mobile health (mHealth) interventions have been shown to effectively aid cancer survivors in dealing with many of the aftereffects of cancer and its treatments; these interventions hold immense potential for survivors living with disabilities. We developed a prototype for WeCanManage, an mHealth-delivered self-management intervention to empower cancer survivors living with disabilities through problem-solving, mindfulness, and self-advocacy training. Objective: Our study conducted a heuristic evaluation of the WeCanManage high-fidelity prototype and assessed its usability among cancer survivors with known disabilities. Methods: We evaluated the prototype using Nielsen?s 10 principles of heuristic evaluation with 22 human-computer interaction university students. On the basis of the heuristic evaluation findings, we modified the prototype and conducted usability testing on 10 cancer survivors with a variety of known disabilities, examining effectiveness, efficiency, usability, and satisfaction, including a completion of the modified System Usability Scale (SUS). Results: The findings from the heuristic evaluation were mostly favorable, highlighting the need for a help guide, addressing accessibility concerns, and enhancing the navigation experience. After usability testing, the average SUS score was 81, indicating a good-excellent design. The participants in the usability testing sample expressed positive reactions toward the app?s design, educational content and videos, and the available means of connecting with others. They identified areas for improvement, such as improving accessibility, simplifying navigation within the community forums, and providing a more convenient method to access the help guide. Conclusions: Overall, usability testing showed positive results for the design of WeCanManage. The course content and features helped participants feel heard, understood, and less alone. UR - https://humanfactors.jmir.org/2024/1/e51522 UR - http://dx.doi.org/10.2196/51522 UR - http://www.ncbi.nlm.nih.gov/pubmed/38564261 ID - info:doi/10.2196/51522 ER - TY - JOUR AU - Savolainen, Kaisa AU - Kujala, Sari PY - 2024/3/8 TI - Testing Two Online Symptom Checkers With Vulnerable Groups: Usability Study to Improve Cognitive Accessibility of eHealth Services JO - JMIR Hum Factors SP - e45275 VL - 11 KW - eHealth KW - online symptom checkers KW - usability KW - cognitive accessibility KW - web accessibility KW - qualitative research N2 - Background: The popularity of eHealth services has surged significantly, underscoring the importance of ensuring their usability and accessibility for users with diverse needs, characteristics, and capabilities. These services can pose cognitive demands, especially for individuals who are unwell, fatigued, or experiencing distress. Additionally, numerous potentially vulnerable groups, including older adults, are susceptible to digital exclusion and may encounter cognitive limitations related to perception, attention, memory, and language comprehension. Regrettably, many studies overlook the preferences and needs of user groups likely to encounter challenges associated with these cognitive aspects. Objective: This study primarily aims to gain a deeper understanding of cognitive accessibility in the practical context of eHealth services. Additionally, we aimed to identify the specific challenges that vulnerable groups encounter when using eHealth services and determine key considerations for testing these services with such groups. Methods: As a case study of eHealth services, we conducted qualitative usability testing on 2 online symptom checkers used in Finnish public primary care. A total of 13 participants from 3 distinct groups participated in the study: older adults, individuals with mild intellectual disabilities, and nonnative Finnish speakers. The primary research methods used were the thinking-aloud method, questionnaires, and semistructured interviews. Results: We found that potentially vulnerable groups encountered numerous issues with the tested services, with similar problems observed across all 3 groups. Specifically, clarity and the use of terminology posed significant challenges. The services overwhelmed users with excessive information and choices, while the terminology consisted of numerous complex medical terms that were difficult to understand. When conducting tests with vulnerable groups, it is crucial to carefully plan the sessions to avoid being overly lengthy, as these users often require more time to complete tasks. Additionally, testing with vulnerable groups proved to be quite efficient, with results likely to benefit a wider audience as well. Conclusions: Based on the findings of this study, it is evident that older adults, individuals with mild intellectual disability, and nonnative speakers may encounter cognitive challenges when using eHealth services, which can impede or slow down their use and make the services more difficult to navigate. In the worst-case scenario, these challenges may lead to errors in using the services. We recommend expanding the scope of testing to include a broader range of eHealth services with vulnerable groups, incorporating users with diverse characteristics and capabilities who are likely to encounter difficulties in cognitive accessibility. UR - https://humanfactors.jmir.org/2024/1/e45275 UR - http://dx.doi.org/10.2196/45275 UR - http://www.ncbi.nlm.nih.gov/pubmed/38457214 ID - info:doi/10.2196/45275 ER - TY - JOUR AU - Stendal, Karen AU - Bernabe, C. Rosemarie D. L. PY - 2024/2/13 TI - Extended Reality?New Opportunity for People With Disability? Practical and Ethical Considerations JO - J Med Internet Res SP - e41670 VL - 26 KW - extended reality KW - virtual worlds KW - virtual reality KW - disability KW - practical KW - ethical KW - technology KW - virtual KW - reality KW - development KW - research KW - challenges UR - https://www.jmir.org/2024/1/e41670 UR - http://dx.doi.org/10.2196/41670 UR - http://www.ncbi.nlm.nih.gov/pubmed/38349731 ID - info:doi/10.2196/41670 ER - TY - JOUR AU - Evans, Eric AU - Zengul, Ayse AU - Subhash Chilke, Tejaswini AU - Knight, Amy AU - Willig, Amanda AU - Cherrington, Andrea AU - Mehta, Tapan AU - Thirumalai, Mohanraj PY - 2024/2/12 TI - Telehealth Behavioral Intervention for Chronic Disease Self-Management in Adults With Physical Disabilities (My Health, My Life, My Way): Protocol for Intervention Fidelity and Dashboard Design for a Randomized Controlled Trial JO - JMIR Res Protoc SP - e53410 VL - 13 KW - chronic health conditions KW - telehealth KW - health coaching KW - self-management KW - intervention fidelity protocol N2 - Background: Individuals with physical disabilities experience higher rates of chronic health conditions than individuals without physical disabilities. Self-management programs that use health coaching are effective at eliciting health behavior change in health outcomes such as goal setting, adherence, and health care use. Additionally, web-based resources such as telehealth-based technologies, including SMSS text messaging, web-based applications, and educational multimedia content, can complement health coaching to improve health-related behaviors and the use of health services. The complexity of studies using these resources requires a fidelity protocol to ensure that health behavior studies are administered properly. Objective: The My Health, My Life, My Way fidelity protocol provides methods, strategies, and procedures of a multifaceted telehealth program for individuals with permanent physical disabilities and chronic health conditions. This health behavior study is a randomized controlled trial with four study arms: (1) scheduled coaching calls with gamified rewards, (2) no scheduled coaching calls with gamified rewards, (3) scheduled coaching calls with fixed rewards, and (4) no scheduled coaching calls with fixed rewards. To guide the fidelity protocol developed, we used the National Institutes of Health Behavior Change Consortium framework (NIH BCC). Methods: The fidelity intervention protocol was developed by using the 5 primary domains provided by the NIH BCC: study design, provider training, treatment delivery, treatment receipt, and enactment of treatment skills. Following the NIH BCC guidelines and implementing social cognitive theory, this study is designed to ensure that all study arms receive equal treatment across conditions and groups. Health coaches and providers will be trained to deliver consistent health coaching, and thus participants will receive appropriate attention. Educational content will be developed to account for health literacy and comprehension of the material. Multiple fidelity intervention steps such as coaching call logs, regular content review, and participant progress monitoring will translate to participants using the skills learned in their daily lives. Different monitoring steps will be implemented to minimize differences among the 4 treatment groups. Results: My Health, My Life, My Way has been approved by the institutional review board and will begin enrollment in January 2024 and end in December 2024, with results reported in early 2025. Conclusions: Intervention fidelity protocols are necessary to ensure that health behavior change studies can be implemented in larger real-world settings. The My Health, My Life, My Way fidelity protocol has used the guidelines by the NIH BCC to administer a telehealth intervention combined with health coaching for individuals with physical disabilities and chronic health conditions. This fidelity protocol can be used as a complementary resource for other researchers who conduct similar research using telehealth technologies and health coaching in real-world settings. Trial Registration: ClinicalTrials NCT05481593; https://clinicaltrials.gov/study/NCT05481593 International Registered Report Identifier (IRRID): PRR1-10.2196/53410 UR - https://www.researchprotocols.org/2024/1/e53410 UR - http://dx.doi.org/10.2196/53410 UR - http://www.ncbi.nlm.nih.gov/pubmed/38345845 ID - info:doi/10.2196/53410 ER - TY - JOUR AU - Smeets, Gerianne AU - Volkers, Karin AU - Scherder, Erik AU - Moonen, Xavier PY - 2024/2/7 TI - An Individual Music Intervention for Adults With Intellectual Disabilities and Challenging Behavior: Protocol for a Randomized Controlled Trial JO - JMIR Res Protoc SP - e52497 VL - 13 KW - music intervention KW - intellectual disability KW - challenging behavior KW - executive functioning KW - self-esteem KW - anxiety KW - depression KW - randomized controlled trial KW - RCT KW - study protocol KW - well-being N2 - Background: Individuals with intellectual disabilities (ID) are more likely to have problems with executive functioning (EF) and challenging behavior (CB), which are negatively linked to well-being. Among clinical populations, music interventions have been shown to improve various outcome measures, such as CB and EF. Until now, no randomized controlled trials (RCTs) have been conducted to examine the effectiveness of an individual music intervention for adults with ID and CB. Objective: The study aims to identify the effect and feasibility of an individual music intervention compared with care-as-usual for people with ID and CB. Methods: In this study, a 2-group RCT with a pretest, posttest, and follow-up assessment after 8 weeks is presented. Participants of the music intervention condition will receive 16 individual music sessions within 8 to 10 weeks. The music intervention will be guided by a manual for music workers, in which every session will have a different focus (introduction, emotions, different EF, and end performance). Participants receiving care as usual will function as a control group. After the research is finished, they will be offered a budget, which they can spend on musical activities or musical instruments as they wish. Assessments will include caregiver rating scales and self-report questionnaires and tests, which will assess outcome measures of CB, well-being, depression, anxiety, self-esteem, and 4 domains of EF. A process evaluation will be conducted after the completion of the study, which entails the analysis of data on multiple aspects of the intervention and the study overall. Results: Enrollment commenced in July 2021, and data collection ended in May 2023. A total of 97 participants were recruited, with 44 participants allocated to the intervention group and 53 allocated to the control group. Data will be analyzed after this protocol has been accepted for publication. Conclusions: Because there are currently no published RCTs of an individual music intervention for adults with ID and CB, this study will provide insight into the effectiveness and experiences of an individual music intervention for this target group. Trial Registration: International Clinical Trials Registry Platform NL8482; http://tinyurl.com/4565s5pd International Registered Report Identifier (IRRID): DERR1-10.2196/52497 UR - https://www.researchprotocols.org/2024/1/e52497 UR - http://dx.doi.org/10.2196/52497 UR - http://www.ncbi.nlm.nih.gov/pubmed/38324357 ID - info:doi/10.2196/52497 ER - TY - JOUR AU - Trofimchuk, Vitaliy AU - Dossanov, Bolatbek AU - Lozovoy, Vassiliy AU - Khmyzov, Sergey AU - Dossanova, Assem AU - Angelov, Aleksandr AU - Pashenko, Andrey AU - Zhukenov, Olzhas PY - 2024/1/24 TI - Quality of Life in Children With Achondroplasia Undergoing Paired Limb Lengthening With an External Fixator and Modified Distraction Control: Observational Nonrandomized Study JO - JMIR Rehabil Assist Technol SP - e49261 VL - 11 KW - achondroplasia KW - external fixator KW - quality of life KW - transosseous osteosynthesis KW - paired limb lengthening KW - bone growth disorder KW - dwarfism KW - limb lengthening KW - circular multiaxial system KW - hereditary disease KW - limb reconstruction KW - children KW - youth KW - pediatric KW - bone disorder KW - orthopedics KW - rehabilitation KW - bone KW - growth KW - disorder KW - genetic N2 - Background: Transosseous distraction osteosynthesis is prioritized in orthopedic care for children with achondroplasia. However, difficulties encountered during treatment and rehabilitation directly impact patients? quality of life. Using rod external fixators within a semicircular frame for osteosynthesis is less traumatic compared to spoke circular devices. Their straightforward assembly and mounting on the limb segment can help significantly reduce treatment duration, thereby improving children?s quality of life during treatment and rehabilitation. Objective: This study aimed to conduct a comparative analysis of the quality of life (measured by postoperative pain syndrome, physical activity, and emotional state) among children with achondroplasia undergoing paired limb lengthening using either an external fixator with modified distraction control or a circular multiaxial system developed by the authors. Methods: This was an observational, prospective, nonrandomized, and longitudinal study with historical control. The study group consisted of 14 patients ranging from 5 to 15 (mean 7.6, SD 2.3) years old with a genetically confirmed diagnosis of achondroplasia. All patients underwent paired limb lengthening with a rod external fixator and a modified distraction control developed by the authors. A total of 28 limb segments, among them 4 (14%) humeri, 8 (29%) femurs, and 16 (57%) tibias, were lengthened in 1 round. Unpublished data from the previous study served as the control group, comprising 9 patients (18 limb segments) of the same age group (mean age at surgery 8.6, SD 2.3 years), who underwent limb lengthening surgery using a circular multiaxial system?2 (11%) humeri, 6 (33%) femurs, and 10 (56%) tibias. The Wong-Baker Faces Rating Scale was used to measure pain symptoms, while the Russified Pediatric Quality of Life (PedsQL) v4.0 questionnaire assessed quality of life. Results: During the latent phase (7 to 10 days after surgery), a more pronounced decrease in the indicators of physical activity and emotional state on the PedsQL v4.0 questionnaire was noted in the control group (mean 52.4, SD 4.8 versus mean 52.8, SD 5.5 points according to children?s responses and their parents? responses, respectively) compared to the experimental group (mean 59.5, SD 6.8 points and mean 61.33, SD 6.5 points according to the children?s responses and their parents? responses, respectively). The differences between the groups were statistically significant (P<.05 for children's responses and P<.01 for parents? responses). Importantly, 6 months after surgery, these quality-of-life indicators, as reported by children in the experimental group, averaged 70.25 (SS 4.8) points. Similarly, their parents reported a mean of 70.54 (SD 4.2) points. In the control group, the corresponding values were 69.64 (SD 5.6) and 69.35 (SD 6.2), respectively. There was no statistically significant difference between the groups. Conclusions: The external fixator with modified distraction control developed by the authors provides a higher standard of living compared with the circular multiaxial system during the latency phase. UR - https://rehab.jmir.org/2024/1/e49261 UR - http://dx.doi.org/10.2196/49261 UR - http://www.ncbi.nlm.nih.gov/pubmed/38265860 ID - info:doi/10.2196/49261 ER - TY - JOUR AU - Maenhout, Laura AU - Latomme, Julie AU - Cardon, Greet AU - Crombez, Geert AU - Van Hove, Geert AU - Compernolle, Sofie PY - 2024/1/11 TI - Synergizing the Behavior Change Wheel and a Cocreative Approach to Design a Physical Activity Intervention for Adolescents and Young Adults With Intellectual Disabilities: Development Study JO - JMIR Form Res SP - e51693 VL - 8 KW - Behavior Change Wheel KW - cocreation KW - intervention KW - physical activity KW - adolescents KW - young adults KW - intellectual disabilities N2 - Background: There is a need for physical activity promotion interventions in adolescents and young adults with intellectual disabilities. Current interventions have shown limited effectiveness, which may be attributed to the absence of theory and a population-specific development. Combining a planning model (including theory) and cocreation with the target audience during intervention development could potentially address this gap. Objective: This study aimed to report the systematic development of the Move it, Move ID! intervention by describing how the 8 different steps of the Behavior Change Wheel (BCW) were applied and present the results that emerged from those steps. In doing so, the (theoretical) content of the intervention is described in detail. Methods: A total of 23 adolescents and young adults (aged 14-22 years) with mild to moderate intellectual disabilities were designated as cocreators of the intervention. Across 2 groups, 6 similar cocreation sessions were organized in each. The content and sequence of the sessions were structured to align with the 8 steps of the BCW. All sessions were recorded and transcribed verbatim. Both a deductive (ie, steps of the BCW) and inductive (ie, resonating the voice of the participants) analysis approach were applied specifically focusing on identifying and describing the findings within each of the BCW steps. Results: After behavioral analysis (steps 1-4), 10 intervention goals were chosen and linked to Capability, Opportunity, and Motivation?Behavior components (theory within the BCW) that needed to be addressed. Psychological capability, social opportunity, and reflective motivation were emphasized as the first targets to focus on. A key finding was the urge for real-life social connectedness and social integration, which makes the social component as part of physical activity a central theme to focus on within intervention development. Judgments on the most suitable intervention functions (step 5) and behavior change techniques (step 7) were explained. When discussing the mode of delivery of the intervention (step 8), it was underscored that solely relying on a mobile health app would not fulfill participants? social needs. Hence, the chosen intervention adopts a dyadic approach in which young individuals with intellectual disabilities are matched with peers without intellectual disabilities to engage in physical activities together, with a mobile app playing a supportive role in this partnership. Conclusions: The transparent description of the development process highlights why certain intervention components and behavior change techniques were chosen and how they are intertwined by means of the selected intervention design. This paper provides a detailed blueprint for practitioners wanting to integrate the BCW and its associated behavior change techniques, in combination with actively involving the target group, into their intervention development for people with intellectual disabilities. UR - https://formative.jmir.org/2024/1/e51693 UR - http://dx.doi.org/10.2196/51693 UR - http://www.ncbi.nlm.nih.gov/pubmed/38206648 ID - info:doi/10.2196/51693 ER - TY - JOUR AU - Nan, Xiaofeng AU - Kuru Çolak, Tu?ba AU - Akçay, Burçin AU - Xie, Hua AU - Zhao, Liwei AU - Borysov, Maksym PY - 2024/1/10 TI - Results of Gensingen Bracing in Patients With Adolescent Idiopathic Scoliosis: Retrospective Cross-Sectional Feasibility Study JO - JMIR Rehabil Assist Technol SP - e50299 VL - 11 KW - scoliosis KW - brace treatment KW - feasibility study KW - outcome KW - skeletal KW - spine KW - back KW - musculoskeletal KW - curvature KW - spinal KW - database KW - template KW - design KW - brace KW - orthopedics KW - injury KW - rehabilitation KW - Gensingen brace KW - conservative brace treatment KW - Idiopathic Scoliosis KW - orthopedic KW - injuries KW - data science KW - data management N2 - Background: Bracing is an essential part of scoliosis treatment. The standard of brace treatment for patients with scoliosis today is still very variable in terms of brace quality and outcome. The Gensingen brace is a further developed Chêneau brace derivative with individual design, which can be adapted through computer-aided design. Objective: This study aims to generate a template to obtain a database for prospective multicenter studies study to analyze the results of high-corrective asymmetric Gensingen brace treatment for patients with adolescent idiopathic scoliosis (AIS). Methods: A template for the database was created, which contains the patients' basic data (age, menarcheal status, Risser Sign, curve pattern, and daily brace wearing time), the Cobb angles of curvature, and the cosmetically relevant angles of trunk rotation (ATR). A retrospective review of medical records of patients with AIS, who met the Scoliosis Research Society?s inclusion criteria for brace studies, was performed to test the feasibility of the template. Template items were filled in by the researchers. Results: Out of 115 patients between 2014 and 2018, the complete data of 33 patients followed up at least 3 months after complete Gensingen brace weaning could be analyzed. The mean age was 12 years, the mean Cobb angle was 33.6°, and the mean Risser value was 0.7 at the beginning of the treatment. The mean improvement in the Cobb angle on in-brace x-ray imaging was ?26.1? (80% of in-brace correction). The Cobb angle of the major curvature changed as follows: curve stabilization was achieved in 7 (21.2%) cases, and curve improvement was achieved in 26 (78.8%) cases. None of the patients showed a curve progression. The Cobb angle was significantly reduced in the brace at the end of treatment and at follow-up evaluation (P<.001). ATR improved significantly for thoracic (P<.001) and lumbar curves (P<.001). Conclusions: The database proved to be informative in the assessment of radiological and clinical outcome parameters. The example data set we have generated can be a helpful tool for professionals who work in clinics but do not store regular patient data. Especially with regard to different patient collectives worldwide, different results may be achieved with the same standards of care. In addition, the results of this study suggest that above-average correction effects with a full-time brace application lead to significant improvements in the Cobb angle after brace treatment has been completed. UR - https://rehab.jmir.org/2024/1/e50299 UR - http://dx.doi.org/10.2196/50299 UR - http://www.ncbi.nlm.nih.gov/pubmed/38198197 ID - info:doi/10.2196/50299 ER - TY - JOUR AU - Bass, Alec AU - Morin, N. Suzanne AU - Guidea, Michael AU - Lam, T. Jacqueline T. A. AU - Karelis, D. Antony AU - Aubertin-Leheudre, Mylène AU - Gagnon, H. Dany AU - PY - 2024/1/1 TI - Potential Effects of an Exoskeleton-Assisted Overground Walking Program for Individuals With Spinal Cord Injury Who Uses a Wheelchair on Imaging and Serum Markers of Bone Strength: Pre-Post Study JO - JMIR Rehabil Assist Technol SP - e53084 VL - 11 KW - assistive technology KW - bone architecture KW - bone turnover KW - osteoporosis KW - rehabilitation KW - spinal cord injuries KW - SCI KW - spinal cord injury KW - assistive device KW - wheelchair KW - exoskeleton device KW - locomotion KW - bone strength KW - risk KW - fracture N2 - Background: As many as 60% of individuals use a wheelchair long term after a spinal cord injury (SCI). This mode of locomotion leads to chronic decline in lower-extremity weight-bearing activities and contributes to the development of severe sublesional osteoporosis and high rates of fragility fracture. Overground exoskeleton-assisted walking programs provide a novel opportunity to increase lower-extremity weight bearing, with the potential to improve bone health. Objective: The aim of the study is to measure the potential effects of an exoskeleton-assisted walking program on lower-extremity bone strength and bone remodeling biomarkers in individuals with chronic (?18 months) SCI who use a wheelchair. Methods: In total, 10 participants completed a 16-week exoskeleton-assisted walking program (34 individualized 1-hour sessions, progressing from 1 to 3 per week). Bone mineral density and bone strength markers (dual-energy x-ray absorptiometry: total body, left arm, leg, total hip, and femoral neck and peripheral quantitative computed tomography: 25% of left femur and 66% of left tibia) as well as bone remodeling biomarkers (formation=osteocalcin and resorption=C-telopeptide) were measured before and after intervention and compared using nonparametric tests. Changes were considered significant and meaningful if the following criteria were met: P<0.1, effect size ?0.5, and relative variation >5%. Results: Significant and meaningful increases were observed at the femur (femoral neck bone mineral content, bone strength index, and stress-strain index) and tibia (cortical cross-sectional area and polar moment of inertia) after the intervention (all P<.10). We also noted a decrease in estimated femoral cortical thickness. However, no changes in bone remodeling biomarkers were found. Conclusions: These initial results suggest promising improvements in bone strength markers after a 16-week exoskeleton-assisted walking program in individuals with chronic SCI. Additional research with larger sample sizes, longer interventions (possibly of greater loading intensity), and combined modalities (eg, pharmacotherapy or functional electrical stimulation) are warranted to strengthen current evidence. Trial Registration: ClinicalTrials.gov NCT03989752; https://clinicaltrials.gov/ct2/show/NCT03989752 International Registered Report Identifier (IRRID): RR2-10.2196/19251 UR - https://rehab.jmir.org/2024/1/e53084 UR - http://dx.doi.org/10.2196/53084 UR - http://www.ncbi.nlm.nih.gov/pubmed/38163294 ID - info:doi/10.2196/53084 ER - TY - JOUR AU - Evans, Eric AU - Zengul, Ayse AU - Knight, Amy AU - Willig, Amanda AU - Cherrington, Andrea AU - Mehta, Tapan AU - Thirumalai, Mohanraj PY - 2023/12/18 TI - Stakeholders? Perspectives, Needs, and Barriers to Self-Management for People With Physical Disabilities Experiencing Chronic Conditions: Focus Group Study JO - JMIR Rehabil Assist Technol SP - e43309 VL - 10 KW - self-management KW - physical disabilities KW - physical disability KW - chronic condition KW - chronic illness KW - mental health KW - physical activity KW - barrier KW - disability KW - chronic KW - technology KW - interview KW - data KW - symptom KW - support KW - digital KW - development KW - need KW - perspective KW - qualitative KW - focus group KW - assistive technology KW - assistive technologies N2 - Background: While self-management programs have had significant improvements for individuals with chronic conditions, less is known about the impact of self-management programs for individuals with physical disabilities who experience chronic conditions, as no holistic self-management programs exist for this population. Similarly, there is limited knowledge of how other stakeholders, such as caregivers, health experts, and researchers, view self-management programs in the context of disability, chronic health conditions, and assistive technologies. Objective: This study aimed to obtain insight into how stakeholders perceive self-management relating to physical disability, chronic conditions, and assistive technologies. Methods: Nine focus groups were conducted by 2 trained facilitators using semistructured interview guides. Each guide contained questions relating to stakeholders? experiences, challenges with self-management programs, and perceptions of assistive technologies. Focus groups were audio recorded and transcribed. Thematic analysis was conducted on the focus group data. Results: A total of 47 individuals participated in the focus groups. By using a constructivist grounded approach and inductive data collection, three main themes emerged from the focus groups: (1) perspectives, (2) needs, and (3) barriers of stakeholders. Stakeholders emphasized the importance of physical activity, mental health, symptom management, medication management, participant centeredness, and chronic disease and disability education. Participants viewed technology as a beneficial aide to their daily self-management and expressed their desire to have peer-to-peer support in web-based self-management programs. Additional views of technology included the ability to access individualized, educational content and connect with other individuals who experience similar health conditions or struggle with caregiving duties. Conclusions: The findings suggest that the development of any web-based self-management program should include mental health education and resources in addition to physical activity content and symptom management and be cost-effective. Beyond the inclusion of educational resources, stakeholders desired customization or patient centeredness in the program to meet the overall needs of individuals with physical disabilities and caregivers. The development of web-based self-management programs should be holistic in meeting the needs of all stakeholders. Trial Registration: ClinicalTrials.gov NCT05481593; https://clinicaltrials.gov/study/NCT05481593 UR - https://rehab.jmir.org/2023/1/e43309 UR - http://dx.doi.org/10.2196/43309 UR - http://www.ncbi.nlm.nih.gov/pubmed/38109170 ID - info:doi/10.2196/43309 ER - TY - JOUR AU - Lindsay, Sally AU - Kosareva, Polina AU - Thomson, Nicole AU - Stinson, Jennifer PY - 2023/12/8 TI - A Codeveloped Web-Based Disability Disclosure Toolkit for Youth With Disabilities: Mixed Methods Pilot Evaluation JO - JMIR Form Res SP - e48609 VL - 7 KW - disability KW - disclosure KW - employment KW - vocational rehabilitation KW - youth and young adults KW - usability testing KW - qualitative KW - pilot study KW - co-design N2 - Background: Youth and young adults with disabilities experience many barriers in securing employment such as discrimination, inaccessible environments, and lack of support. Youth often need to decide whether and how they should disclose their need for accommodations to employers, which can help them to do their best at work. However, few evidence-based toolkits focusing on disability disclosure exist for youth with various types of disabilities. Supporting youth to develop self-advocacy skills is salient because they are an underrepresented and marginalized group in the labor market. Objective: The objective of this study was to conduct a pilot evaluation of a web-based toolkit to enhance disability disclosure for youth and young adults helping to advocate for their needs and request workplace accommodations. Methods: We conducted 2 in-person focus groups to codevelop a web-based disability disclosure toolkit, which was followed by a pilot evaluation with a pre-post survey. Primary outcomes focused on the relevance of the toolkit content, preliminary perceived impact on knowledge and confidence, and open-ended feedback on the usefulness of the toolkit. Secondary outcomes focused on effectiveness (ie, measures of self-determination). Results: A total of 14 youths with various types of disabilities took part in the study (aged 20-25 years; n=11, 78% female) including 3 who participated in the codevelopment focus group sessions and 11 youths who participated in the surveys. Our findings involved three main themes in the codevelopment sessions that included (1) disability disclosure and workplace accommodation experiences (ie, knowing when, whether, and how to disclose their disability and request workplace accommodations), (2) usefulness of the tool (ie, relatable content, format and design, and suggestions for further development), and (3) perceived impact of the toolkit (ie, navigating disclosure decisions and how to approach employers and develop other relevant employment skills). The survey findings showed that the majority of participants (10/11, 91%) reported that the toolkit increased or changed their knowledge or understanding of disability disclosure. Most participants (8/11, 73%) reported that the toolkit helped to increase their perceived confidence in their daily activities. The majority of participants (8/11, 73%) agreed or strongly agreed that the toolkit was easy to understand and comprehensive. Regarding the preliminary impact of the toolkit, participants did not demonstrate any significant improvements in self-determination (all P>.05). Conclusions: Our findings emphasize the importance of codeveloping a disability disclosure toolkit with youth to enhance its relevance for their needs. Our toolkit indicates preliminary potential as an educational resource for youth and young adults with disabilities as they search for and secure employment. Further research is needed to assess the impact of the tool with larger samples to understand the impact of workplace disability disclosure decisions for youth with disabilities. UR - https://formative.jmir.org/2023/1/e48609 UR - http://dx.doi.org/10.2196/48609 UR - http://www.ncbi.nlm.nih.gov/pubmed/38064264 ID - info:doi/10.2196/48609 ER - TY - JOUR AU - Ota, Hirofumi AU - Mukaino, Masahiko AU - Inoue, Yukari AU - Matsuura, Shoh AU - Yagi, Senju AU - Kanada, Yoshikiyo AU - Saitoh, Eiichi AU - Otaka, Yohei PY - 2023/12/5 TI - Movement Component Analysis of Reaching Strategies in Individuals With Stroke: Preliminary Study JO - JMIR Rehabil Assist Technol SP - e50571 VL - 10 KW - stroke KW - upper limb paresis KW - compensatory movements KW - three-dimensional motion analysis KW - reaching movement KW - rehabilitation KW - motion analysis KW - reaching KW - 3D KW - three dimensional KW - motion capture KW - motion KW - movement KW - limb KW - extremity KW - extremities KW - mobility KW - hemiparesis KW - paralysis KW - compensate KW - compensatory N2 - Background: Upper limb motor paresis is a major symptom of stroke, which limits activities of daily living and compromises the quality of life. Kinematic analysis offers an in-depth and objective means to evaluate poststroke upper limb paresis, with anticipation for its effective application in clinical settings. Objective: This study aims to compare the movement strategies of patients with hemiparesis due to stroke and healthy individuals in forward reach and hand-to-mouth reach, using a simple methodology designed to quantify the contribution of various movement components to the reaching action. Methods: A 3D motion analysis was conducted, using a simplified marker set (placed at the mandible, the seventh cervical vertebra, acromion, lateral epicondyle of the humerus, metacarpophalangeal [MP] joint of the index finger, and greater trochanter of the femur). For the forward reach task, we measured the distance the index finger?s MP joint traveled from its starting position to the forward target location on the anterior-posterior axis. For the hand-to-mouth reach task, the shortening of the vertical distance between the index finger MP joint and the position of the chin at the start of the measurement was measured. For both measurements, the contributions of relevant upper limb and trunk movements were calculated. Results: A total of 20 healthy individuals and 10 patients with stroke participated in this study. In the forward reach task, the contribution of shoulder or elbow flexion was significantly smaller in participants with stroke than in healthy participants (mean 52.5%, SD 24.5% vs mean 85.2%, SD 4.5%; P<.001), whereas the contribution of trunk flexion was significantly larger in stroke participants than in healthy participants (mean 34.0%, SD 28.5% vs mean 3.0%, SD 2.8%; P<.001). In the hand-to-mouth reach task, the contribution of shoulder or elbow flexion was significantly smaller in participants with stroke than in healthy participants (mean 71.8%, SD 23.7% vs mean 90.7%, SD 11.8%; P=.009), whereas shoulder girdle elevation and shoulder abduction were significantly larger in participants with stroke than in healthy participants (mean 10.5%, SD 5.7% vs mean 6.5%, SD 3.0%; P=.02 and mean 16.5%, SD 18.7% vs mean 3.0%, SD 10.4%; P=.02, respectively). Conclusions: Compared with healthy participants, participants with stroke achieved a significantly greater distance via trunk flexion in the forward reach task and shoulder abduction and shoulder girdle elevation in the hand-to-mouth reach task, both of these differences are regarded as compensatory movements. Understanding the characteristics of individual motor strategies, such as dependence on compensatory movements, may contribute to tailored goal setting in stroke rehabilitation. UR - https://rehab.jmir.org/2023/1/e50571 UR - http://dx.doi.org/10.2196/50571 UR - http://www.ncbi.nlm.nih.gov/pubmed/38051570 ID - info:doi/10.2196/50571 ER - TY - JOUR AU - Ha, Sandeul AU - Ho, Hee Seung AU - Bae, Young-Hyeon AU - Lee, Minyoung AU - Kim, Hee Ju AU - Kim, Han Ju AU - Lee, Jisan PY - 2023/11/28 TI - Digital Health Equity and Tailored Health Care Service for People With Disability: User-Centered Design and Usability Study JO - J Med Internet Res SP - e50029 VL - 25 KW - digital health equity KW - digital health care service KW - COVID-19 KW - mobile health KW - mHealth KW - mobile apps KW - needs assessments KW - heuristic KW - people with disability KW - caregivers KW - health personnel KW - mobile phone N2 - Background: As digital health services advance, digital health equity has become a significant concern. However, people with disability and older adults still face health management limitations, particularly in the COVID-19 pandemic. An essential area of investigation is proposing a patient-centered design strategy that uses patient-generated health data (PGHD) to facilitate optimal communication with caregivers and health care service providers. Objective: This study aims to conceptualize, develop, and validate a digitally integrated health care service platform for people with disability, caregivers, and health care professionals, using Internet of Things devices and PGHD to contribute to improving digital health equity. Methods: The methodology consists of 5 stages. First, a collaborative review of the previous app, Daily Healthcare 1.0, was conducted with individuals with disabilities, caregivers, and health care professionals. Secondly, user needs were identified via personas, scenarios, and user interface sketches to shape a user-centered service design. The third stage created an enhanced app that integrated these specifications. In the fourth stage, heuristic evaluations by clinical and app experts paved the way for Daily Healthcare 2.0, now featuring Internet of Things device integration. Conclusively, in the fifth stage, an extensive 2-month usability evaluation was executed with user groups comprising individuals with disabilities using the app and their caregivers. Results: Among the participants, ?disability welfare information and related institutional linkage? was the highest priority. Three of the 14 user interface sketches the participants created were related to ?providing educational content.? The 11 heuristic evaluation experts identified ?focusing on a single task? as a crucial issue and advocated redesigning the home menu to simplify it and integrate detailed menus. Subsequently, the app Daily Healthcare 2.0 was developed, incorporating wearable devices for collecting PGHD and connecting individuals with disabilities, caregivers, and health care professionals. After the 2-month usability evaluation with 27 participants, all participants showed an increase in eHealth literacy, particularly those who used the caregiver app. Relatively older users demonstrated improved scores in health IT usability and smartphone self-efficacy. All users? satisfaction and willingness to recommend increased, although their willingness to pay decreased. Conclusions: In this study, we underscore the significance of incorporating the distinct needs of individuals with disabilities, caregivers, and health care professionals from the design phase of a digital health care service, highlighting its potential to advance digital health equity. Our findings also elucidate the potential benefits of fostering partnerships between health consumers and providers, thereby attenuating the vulnerability of marginalized groups, even amid crises such as the COVID-19 pandemic. Emphasizing this imperative, we advocate for sustained endeavors to bolster the digital literacy of individuals with disabilities and champion collaborative cocreation, aiming to uphold the collective ethos of health and digital health equity. UR - https://www.jmir.org/2023/1/e50029 UR - http://dx.doi.org/10.2196/50029 UR - http://www.ncbi.nlm.nih.gov/pubmed/38015589 ID - info:doi/10.2196/50029 ER - TY - JOUR AU - Ebuenyi, D. Ikenna AU - Flocks-Monaghan, Celina AU - Rai, S. Sarju AU - Vries, de Ralph AU - Bhuyan, S. Soumitra AU - Pearlman, Jonathan AU - Jones, Nev PY - 2023/11/15 TI - Use of Assistive Technology for Persons with Psychosocial Disability: Systematic Review JO - JMIR Rehabil Assist Technol SP - e49750 VL - 10 KW - assistive technology KW - assistive products KW - psychosocial disability KW - inclusion KW - participation KW - rehabilitation KW - psychosocial KW - health policy KW - socioeconomic KW - well-being N2 - Background: Assistive technology (AT) refers to assistive products (AP) and associated systems and services that are relevant for function, independence, well-being, and quality of life for individuals with disabilities. There is a high unmet need for AT for persons with disabilities and this is worse for persons with cognitive and mental or psychosocial disabilities (PDs). Further, information and knowledge on AT for PDs is limited. Objective: The aim of this review was to explore the pattern of AT use among persons with PDs and its associated socioeconomic and health benefits. Methods: The review was reported according to the PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses), and we conducted systematic searches in the 4 databases: PubMed, Embase.com, APA PsycInfo (Ebsco), and Web of Science (Core Collection) with the following index terms: ?Assistive Technology,? ?Self-Help Devices,? ?Quality of Life,? ?Activities of Daily Living,? ?Mental Disorders.? We included only AT individuals with PDs can independently use without reliance on a provider. Identified papers were exported to EndNote (Clarivate) and we undertook a narrative synthesis of the included studies. Results: In total, 5 studies were included in the review which reported use of different AT for schizophrenia, bipolar disorder, depression and anxiety disorders. The APs described in the included studies are Palm tungsten T3 handheld computer, MOBUS, personal digital assistant, automated pill cap, weighted chain blankets, and smartphone function. All the AT products identified in the studies were found to be easily usable by individuals with PDs. The APs reported in the included studies have broad impact and influence on social function, productivity, and treatment or management. The studies were heterogeneous and were all conducted in high-income countries. Conclusions: Our study contributes to and strengthens existing evidence on the relevance of AT for PDs and its potential to support socioeconomic participation and health. Although AT has the potential to improve function and participation for individuals with PDs; this review highlights that research on the subject is limited. Further research and health policy changes are needed to improve research and AT service provision for individuals with PDs especially in low-income settings. Trial Registration: PROSPERO CRD42022343735; https://www.crd.york.ac.uk/prospero/display_record.php?RecordID=343735 UR - https://rehab.jmir.org/2023/1/e49750 UR - http://dx.doi.org/10.2196/49750 UR - http://www.ncbi.nlm.nih.gov/pubmed/37966875 ID - info:doi/10.2196/49750 ER - TY - JOUR AU - Vaezipour, Atiyeh AU - Aldridge, Danielle AU - Koenig, Sebastian AU - Burns, Clare AU - Baghaei, Nilufar AU - Theodoros, Deborah AU - Russell, Trevor PY - 2023/10/31 TI - Rehabilitation Supported by Immersive Virtual Reality for Adults With Communication Disorders: Semistructured Interviews and Usability Survey Study JO - JMIR Rehabil Assist Technol SP - e46959 VL - 10 KW - communication disorders KW - speech and language therapy KW - rehabilitation KW - virtual reality KW - human-computer interaction KW - technology acceptance KW - acceptance KW - communication KW - therapy KW - usefulness KW - usability KW - survey KW - barrier KW - mobile phone N2 - Background: Individuals who have acquired communication disorders often struggle to transfer the skills they learn during therapy sessions to real-life situations. Immersive virtual reality (VR) technology has the potential to create realistic communication environments that can be used both in clinical settings and for practice at home by individuals with communication disorders. Objective: This research aims to enhance our understanding of the acceptance, usefulness, and usability of a VR application (SIM:Kitchen), designed for communication rehabilitation. Additionally, this research aims to identify the perceived barriers and benefits of using VR technology from the perspective of individuals with acquired communication disorders. Methods: Semistructured interviews and usability surveys were conducted with 10 individuals with acquired neurogenic communication disorders aged 46-81 (mean 58, SD 9.57) years after trialing an immersive VR application. The audio-recorded interviews were transcribed and analyzed to identify themes. Results: The quantitative data regarding the usability of the system associated with participants? immersion experience in the VR application were promising. Findings from semistructured interviews are discussed across five key thematic areas including (1) participant?s attitude toward VR, (2) perceived usefulness of the VR system, (3) perceived ease of use of the VR system, (4) their willingness to continue using VR, and (5) the factors they perceived as challenges or facilitators to adopting this VR technology. Conclusions: Overall, participants in this study found the VR experience to be enjoyable and were impressed by the realism of the VR application designed for communication rehabilitation. This study highlighted personally relevant, immersive VR interventions with different levels of task difficulty that could enhance technology uptake in the context of communication rehabilitation. However, it is essential that VR hand controller technology is refined to be more naturalistic in movement and able to accommodate user capabilities. UR - https://rehab.jmir.org/2023/1/e46959 UR - http://dx.doi.org/10.2196/46959 UR - http://www.ncbi.nlm.nih.gov/pubmed/37906228 ID - info:doi/10.2196/46959 ER - TY - JOUR AU - Mendonca, J. Christen AU - Malone, A. Laurie AU - Mohanraj, Sangeetha AU - Thirumalai, Mohanraj PY - 2023/8/3 TI - The Usability of a Touchpad Active Video Game Controller for Individuals With Impaired Mobility: Observational Study JO - JMIR Rehabil Assist Technol SP - e41993 VL - 10 KW - active video games KW - exergames KW - usability KW - enjoyment KW - disability KW - mobility limitation KW - mobility impairment N2 - Background: Video games are a popular sedentary activity among people with impaired mobility; however, active video game hardware typically lacks accessibility and customization options for individuals with mobility impairments. A touchpad video game system can elicit moderate physical activity in healthy adults; however, it is unclear if this system is usable by adults with impaired mobility. Objective: The purpose of this study was to assess the usability of a touchpad video game controller system adapted for adults with impaired mobility. Additional outcomes explored were enjoyment, perceived exertion, self-efficacy, participant feedback, and researcher observations of gameplay. Methods: Participants played several video game titles for 20 minutes with a touchpad video game controller as they stood or sat in a chair or their wheelchair. Usability was assessed with the System Usability Scale (SUS) and the Health Information Technology Usability Evaluation Scale (Health-ITUES) surveys after gameplay. After each video game, participants reported enjoyment using a visual analog scale (0 to 100 mm) and a rating of perceived exertion using the OMNI 0 to 10 scale. Self-efficacy was measured before and after gameplay. Participants provided feedback at the end of their session. Results: In total, 21 adults (6 females and 15 males) with a mean age of 48.8 (SD 13.8) years with various mobility impairments participated in this study. The touchpads received mean usability scores on the SUS 80.1 (SD 18.5) and Health-ITUES 4.23 (SD 0.67). Conclusions: The SUS scores reported suggest the touchpad system is ?usable?; however, the Health-ITUES scores were slightly below a suggested benchmark. Participants reported moderate to high enjoyment but perceived the exertion as ?somewhat easy.? Self-efficacy was moderate to high and did not differ pre- to postgame play. The participants regarded the touchpads as novel, fun, and entertaining. The generalizability of our results is limited due to the heterogenous sample; however, our participants identified several areas of improvement for future iteration. UR - https://rehab.jmir.org/2023/1/e41993 UR - http://dx.doi.org/10.2196/41993 UR - http://www.ncbi.nlm.nih.gov/pubmed/37535411 ID - info:doi/10.2196/41993 ER - TY - JOUR AU - van Calis, E. Julia F. AU - Bevelander, E. Kirsten AU - van der Cruijsen, C. Anneke W. AU - Leusink, L. Geraline AU - Naaldenberg, Jenneken PY - 2023/5/30 TI - Toward Inclusive Approaches in the Design, Development, and Implementation of eHealth in the Intellectual Disability Sector: Scoping Review JO - J Med Internet Res SP - e45819 VL - 25 KW - eHealth KW - digital health KW - intellectual disability KW - inclusive research KW - involvement KW - participatory development KW - scoping review KW - Centre for eHealth Research and Disease management KW - CeHRes roadmap KW - Nonadoption, Abandonment, and challenges to the Scale-up, Spread, and Sustainability framework KW - NASSS KW - review method KW - inclusive KW - inclusivity KW - accessibility KW - participatory KW - iterative KW - design KW - develop KW - intellectually disabled N2 - Background: The use of eHealth is more challenging for people with intellectual disabilities (IDs) than for the general population because the technologies often do not fit the complex needs and living circumstances of people with IDs. A translational gap exists between the developed technology and users? needs and capabilities. User involvement approaches have been developed to overcome this mismatch during the design, development, and implementation processes of the technology. The effectiveness and use of eHealth have received much scholarly attention, but little is known about user involvement approaches. Objective: In this scoping review, we aimed to identify the inclusive approaches currently used for the design, development, and implementation of eHealth for people with IDs. We reviewed how and in what phases people with IDs and other stakeholders were included in these processes. We used 9 domains identified from the Centre for eHealth Research and Disease management road map and the Nonadoption, Abandonment, and challenges to the Scale-up, Spread, and Sustainability framework to gain insight into these processes. Methods: We identified both scientific and gray literature through systematic searches in PubMed, Embase, PsycINFO, CINAHL, Cochrane, Web of Science, Google Scholar, and (websites of) relevant intermediate (health care) organizations. We included studies published since 1995 that showed the design, development, or implementation processes of eHealth for people with IDs. Data were analyzed along 9 domains: participatory development, iterative process, value specification, value proposition, technological development and design, organization, external context, implementation, and evaluation. Results: The search strategy resulted in 10,639 studies, of which 17 (0.16%) met the inclusion criteria. Various approaches were used to guide user involvement (eg, human or user-centered design and participatory development), most of which applied an iterative process mainly during technological development. The involvement of stakeholders other than end users was described in less detail. The literature focused on the application of eHealth at an individual level and did not consider the organizational context. Inclusive approaches in the design and development phases were well described; however, the implementation phase remained underexposed. Conclusions: The participatory development, iterative process, and technological development and design domains showed inclusive approaches applied at the start of and during the development, whereas only a few approaches involved end users and iterative processes at the end of the process and during implementation. The literature focused primarily on the individual use of the technology, and the external, organizational, and financial contextual preconditions received less attention. However, members of this target group rely on their (social) environment for care and support. More attention is needed for these underrepresented domains, and key stakeholders should be included further on in the process to reduce the translational gap that exists between the developed technologies and user needs, capabilities, and context. UR - https://www.jmir.org/2023/1/e45819 UR - http://dx.doi.org/10.2196/45819 UR - http://www.ncbi.nlm.nih.gov/pubmed/37252756 ID - info:doi/10.2196/45819 ER - TY - JOUR AU - Gupta, C. Juhi AU - Arora, M. Vineet AU - Vollbrecht, Hanna AU - Kappel, Nicole AU - Meltzer, O. David AU - Press, G. Valerie PY - 2023/5/24 TI - The Relationship Between Insufficient Vision and Technology Access and Use Among Hospitalized Adults at an Urban Academic Hospital: Observational Study JO - JMIR Form Res SP - e40103 VL - 7 KW - vision KW - health technology KW - chronic disease KW - ownership KW - internet KW - eHealth KW - digital health KW - eye KW - optometry KW - myopia KW - ophthalmology KW - myopic KW - digital device KW - observational study KW - use KW - visual impairment KW - visually impaired N2 - Background: The role of sufficient vision in self-management is salient with respect to the growing prevalence of eHealth-based interventions for chronic diseases. However, the relationship between insufficient vision and self-management has been understudied. Objective: We aimed to assess differences in access to and use of technology among adults with and without insufficient vision at an academic urban hospital. Methods: This is an observational study of hospitalized adult general medicine patients that is part of a larger quality improvement study called the hospitalist study. The hospitalist study provided demographic and health literacy data (Brief Health Literacy Screen). Our substudy included several measures. Validated surveys assessed technology access and use, and included benchmarked questions from the National Pew Survey to determine access to, willingness to use, and self-described ability to use technology at home, particularly for self-management, and eHealth-specific questions assessing future willingness to access eHealth post discharge. The eHealth Literacy Scale (eHEALS) was used to assess eHealth literacy. Visual acuity was assessed using the Snellen pocket eye chart with low vision defined as visual acuity ?20/50 in at least one eye. Descriptive statistics, bivariate chi-square analyses, and multivariate logistic regressions (adjusted for age, race, gender, education level, and eHealth literacy) were performed using Stata. Results: A total of 59 participants completed our substudy. The mean age was 54 (SD 16.4) years. Demographic data from the hospitalist study was missing for several participants. Among those who responded, most identified as Black (n=34, 79%) and female (n=26, 57%), and most reported at least some college education (n=30, 67%). Most participants owned technology devices (n=57, 97%) and had previously used the internet (n=52, 86%), with no significant differences between those with insufficient and sufficient vision (n=34 vs n=25). Though there was a 2x effect size for laptop ownership, with those with sufficient vision more likely to own a laptop, those with insufficient vision versus sufficient vision were less likely to report an ability to perform online tasks without assistance, including using a search engine (n=22, 65% vs n=23, 92%; P=.02), opening an attachment (n=17, 50% vs n=22, 88%; P=.002), and using an online video (n=20, 59% vs n=22, 88%; P=.01). In multivariate analysis, the ability to independently open an online attachment did not remain statistically significant (P=.01). Conclusions: Technology device ownership and internet use rates are high in this population, yet participants with insufficient vision (vs sufficient vision) reported a reduced ability to independently perform online tasks. To ensure the effective use of eHealth technologies by at-risk populations, the relationship between vision and technology use needs to be further studied. UR - https://formative.jmir.org/2023/1/e40103 UR - http://dx.doi.org/10.2196/40103 UR - http://www.ncbi.nlm.nih.gov/pubmed/37223969 ID - info:doi/10.2196/40103 ER - TY - JOUR AU - Bolz, Janika AU - Löscher, Adrian AU - Muhl, Rainer AU - Badke, Andreas AU - Predel, Hans-Georg AU - Perret, Claudio PY - 2023/5/19 TI - Feasibility, Usability, and Safety of ParaGym, an Intelligent Mobile Exercise App for Individuals With Paraplegia: Protocol for a Pilot Block-Randomized Controlled Trial JO - JMIR Res Protoc SP - e45652 VL - 12 KW - spinal cord injury KW - mixed methods KW - exercise KW - fitness KW - home-based KW - algorithm KW - personalization KW - prototype KW - telemedicine KW - digital KW - mobile app KW - mobile phone N2 - Background: Exercise is crucial for individuals with paraplegia to reduce the risk of secondary diseases and improve independence and quality of life. However, numerous barriers such as inadequate accessibility restrict their participation in exercise programs. Digital exercise apps can help overcome these barriers. Personalization is considered a crucial feature of mobile exercise apps, as people with paraplegia have individual requirements regarding exercise programs depending on their level of impairment. Despite the increasing popularity of mobile exercise apps, there are none available that target the individual needs of this cohort. The ParaGym mobile exercise app prototype was designed to automatically tailor exercise sessions to the individual needs of users with paraplegia. Objective: This study aims to evaluate the feasibility, usability, safety, and preliminary effectiveness of the ParaGym mobile exercise app prototype. Methods: This pilot block-randomized controlled feasibility trial will include 45 adult participants with paraplegia. Eligible participants will be block randomized to either the intervention or waitlist control group. The intervention group will perform a 6-week exercise program using the ParaGym mobile exercise app, comprising three 35-minute exercise sessions per week. The waitlist control group will continue their usual care and receive access to the app after study completion. Participants will record all exercise sessions conducted with the app as well as additional exercise sessions conducted during the study period using exercise diaries. The primary outcomes include feasibility, usability, and safety. Feasibility will be assessed through semistructured interviews, study adherence, and retention rates. Usability will be measured using the System Usability Scale. Safety will be determined by the occurrence of adverse events. Secondary outcomes include the effects of the intervention on peak exercise capacity (VO2 peak); handgrip strength; independence, which will be measured using the Spinal Cord Independence Measure III (SCIM III); and health-related quality of life, which will be measured using the Short Form?36 Health Survey (SF-36). Results: Recruitment commenced in November 2022. Overall, 12 participants were enrolled at the time of submission. Data collection commenced in January 2023, with completion expected in April 2023. Conclusions: To the best of our knowledge, this is the first study to assess the feasibility, usability, and safety of an intelligent mobile exercise app for individuals with paraplegia. Thereafter, the app should be adapted according to the findings of this trial. Future trials with an updated version of the app should aim for a larger sample size, longer intervention duration, and more diverse target group. In the long term, a fully marketable version of the ParaGym app should be implemented. This would increase the access to personalized, independent, and evidence-based exercise training for this cohort and, in the future, other people who use wheelchairs. Trial Registration: German Clinical Trials Register DRKS00030370; https://drks.de/search/de/trial/DRKS00030370 International Registered Report Identifier (IRRID): DERR1-10.2196/45652 UR - https://www.researchprotocols.org/2023/1/e45652 UR - http://dx.doi.org/10.2196/45652 UR - http://www.ncbi.nlm.nih.gov/pubmed/37204855 ID - info:doi/10.2196/45652 ER - TY - JOUR AU - Langener, Simon AU - Kolkmeier, Jan AU - VanDerNagel, Joanne AU - Klaassen, Randy AU - van Manen, Jeannette AU - Heylen, Dirk PY - 2023/4/26 TI - Development of an Alcohol Refusal Training in Immersive Virtual Reality for Patients With Mild to Borderline Intellectual Disability and Alcohol Use Disorder: Cocreation With Experts in Addiction Care JO - JMIR Form Res SP - e42523 VL - 7 KW - virtual reality KW - conversational agent KW - embodied agent KW - persuasion KW - peer pressure KW - addiction KW - alcohol KW - intellectual disability N2 - Background: People with mild to borderline intellectual disability (MBID; IQ=50-85) are at risk for developing an alcohol use disorder (AUD). One factor contributing to this risk is sensitivity to peer pressure. Hence, tailored trainings are needed to practice alcohol refusal in impacted patients. Immersive virtual reality (IVR) appears promising to engage patients in dialogs with virtual humans, allowing to practice alcohol refusal realistically. However, requirements for such an IVR have not been studied for MBID/AUD. Objective: This study aims to develop an IVR alcohol refusal training for patients with MBID and AUD. In this work, we cocreated our peer pressure simulation with experienced experts in addiction care. Methods: We followed the Persuasive System Design (PSD) model to develop our IVR alcohol refusal training. With 5 experts from a Dutch addiction clinic for patients with MBID, we held 3 focus groups to design the virtual environment, persuasive virtual human(s), and persuasive dialog. Subsequently, we developed our initial IVR prototype and conducted another focus group to evaluate IVR and procedures for clinical usage, resulting in our final peer pressure simulation. Results: Our experts described visiting a friend at home with multiple friends as the most relevant peer pressure situation in the clinical setting. Based on the identified requirements, we developed a social-housing apartment with multiple virtual friends present. Moreover, we embedded a virtual man with generic appearance to exert peer pressure using a persuasive dialog. Patients can respond to persuasive attempts by selecting (refusal) responses with varying degrees of risk for relapse in alcohol use. Our evaluation showed that experts value a realistic and interactable IVR. However, experts identified lacking persuasive design elements, such as paralanguage, for our virtual human. For clinical usage, a user-centered customization is needed to prevent adverse effects. Further, interventions should be therapist delivered to avoid try-and-error in patients with MBID. Lastly, we identified factors for immersion, as well as facilitators and barriers for IVR accessibility. Conclusions: Our work establishes an initial PSD for IVR for alcohol refusal trainings in patients with MBID and AUD. With this, scholars can create comparable simulations by performing an analogous cocreation, replicate findings, and identify active PSD elements. For peer pressure, conveying emotional information in a virtual human?s voice (eg, paralanguage) seems vital. However, previous rapport building may be needed to ensure that virtual humans are perceived as cognitively capable entities. Future work should validate our PSD with patients and start developing IVR treatment protocols using interdisciplinary teams. UR - https://formative.jmir.org/2023/1/e42523 UR - http://dx.doi.org/10.2196/42523 UR - http://www.ncbi.nlm.nih.gov/pubmed/37099362 ID - info:doi/10.2196/42523 ER - TY - JOUR AU - Maikos, T. Jason AU - Hendershot, D. Brad AU - Pruziner, L. Alison AU - Hyre, J. Michael AU - Chomack, M. John AU - Phillips, L. Samuel AU - Heckman, T. Jeffrey AU - Sidiropoulos, N. Alexis AU - Dearth, L. Christopher AU - Nelson, M. Leif PY - 2023/4/4 TI - Criteria for Advanced Prosthetic Foot Prescription: Rationale, Design, and Protocol for a Multisite, Randomized Controlled Trial JO - JMIR Res Protoc SP - e45612 VL - 12 KW - limb loss KW - amputation KW - prosthetic prescription KW - prosthetic ankle-foot devices KW - lower extremity N2 - Background: The prescription of prosthetic ankle-foot devices is often based on the professional judgment of the limb loss care team or limited evidentiary research. Current prosthetic research efforts have focused on the design and development of prosthetic devices rather than on understanding which devices are the most appropriate to prescribe. This investigation will evaluate biomechanical, functional, and subjective outcome measures to help determine the optimal prescription parameters of prosthetic ankle-foot devices. Objective: This study aims to develop evidence-based guidelines for limb loss care teams for the appropriate prescription of commercially available prosthetic ankle-foot devices to improve function and satisfaction. Methods: This investigation will be a multisite, randomized, crossover clinical trial targeting the enrollment of 100 participants. Participants will use 3 different types of prosthetic devices (energy storing and returning, articulating, and powered) in random order. Participants will be fitted and trained with each device and then separately use each device for a 1-week acclimation period. Following each 1-week acclimation period, participants will be evaluated using several functional measures and subjective surveys. A random subset of participants (30/100, 30%) will also undergo full-body gait analysis, following each 1-week acclimation period, to collect biomechanical data during level ground and incline and decline walking. After all individual device evaluations, participants will be given all 3 prostheses concurrently for 4 weeks of home and community use to capture user preference. Activity monitoring and a guided interview will be used to determine overall user preference. Results: The study was funded in August 2017, and data collection began in 2018. Data collection is expected to be completed before July 2023. Initial dissemination of results is expected to occur in the winter of 2023. Conclusions: By identifying biomechanical, functional, and subjective outcomes that are sensitive to differences in prosthetic ankle-foot devices, a benchmark of evidence can be developed to guide effective prosthetic prescription. Trial Registration: ClinicalTrials.gov NCT03505983; https://clinicaltrials.gov/ct2/show/NCT03505983 International Registered Report Identifier (IRRID): DERR1-10.2196/45612 UR - https://www.researchprotocols.org/2023/1/e45612 UR - http://dx.doi.org/10.2196/45612 UR - http://www.ncbi.nlm.nih.gov/pubmed/37014672 ID - info:doi/10.2196/45612 ER - TY - JOUR AU - Mwaka, R. Claudel AU - Best, L. Krista AU - Gamache, Stéphanie AU - Gagnon, Martine AU - Routhier, François PY - 2023/3/28 TI - Public Transport Accessibility for People With Disabilities: Protocol for a Scoping Review JO - JMIR Res Protoc SP - e43188 VL - 12 KW - accessibility KW - public transport KW - disability KW - experience KW - self-efficacy KW - satisfaction KW - scoping review N2 - Background: Transportation is essential for people of all ages and backgrounds to live a fulfilling and satisfying life. Public transport (PT) can facilitate access to the community and improve social participation. However, people with disabilities may encounter barriers or facilitators in the whole travel chain that can lead to negative or positive perceptions in terms of self-efficacy or satisfaction. These barriers may be perceived depending on the nature of the disability. Few studies have identified PT barriers and facilitators experienced by people with disabilities. However, findings were focused mainly on specific disabilities. Access requires broader considerations of barriers and facilitators for various types of disabilities. Objective: This scoping review aims to describe the barriers and facilitators to the use of PT experienced by people with various disabilities in the whole travel chain and to explore perceived experiences, self-efficacy, and satisfaction when using PT. Methods: A scoping review will be conducted using Arksey and O?Malley?s framework and the PRISMA-ScR (Preferred Reporting Items for Systematic Reviews and Meta-Analyses Extension for Scoping Reviews) checklist. The literature search will be conducted using the electronic databases MEDLINE, Transport Database, and PsycINFO via Ovid platform, Embase, and Web of Science from 1995 to 2022. Two reviewers will independently identify studies based on inclusion (published in English or French, outcomes on PT accessibility for people with disabilities, peer-reviewed or guideline reports or editorials) and exclusion (no full text, focused on a technology system, outcome validation study, study on no-fixed route PT accessibility, etc) criteria and extract the data. When a study has addressed the accessibility of multiple modes of PT, including fixed-route PT, it will be retained. However, only data on fixed-route PT will be extracted. Any related systematic reviews identified through the search will be retained, and the reference lists will be hand-searched and screened for inclusion criteria. Results: The search we performed on July 21, 2022, in the databases mentioned above allowed us to retrieve 6399 citations. Of these citations, 31 articles were identified, and data extraction was performed. As of March 11, 2023, we have started data analysis. The findings will be synthesized narratively to summarize the barriers and facilitators to PT, perceived experiences with PT, self-efficacy for using PT, and satisfaction with PT according to the Human Development Model-Disability Creation Process conceptual framework. Conclusions: The results of this scoping review could lead to a better understanding of the potential barriers and facilitators to the use of PT by people with various types of disabilities and how negative or positive experiences throughout the travel may influence their self-efficacy and satisfaction. The results may be used to provide recommendations to PT providers and policy makers to work together to make PT accessible, usable, and inclusive for all people with disabilities. Trial Registration: Open Science Framework OSF.IO/2JDQS; https://osf.io/2jdqs International Registered Report Identifier (IRRID): DERR1-10.2196/43188 UR - https://www.researchprotocols.org/2023/1/e43188 UR - http://dx.doi.org/10.2196/43188 UR - http://www.ncbi.nlm.nih.gov/pubmed/36976627 ID - info:doi/10.2196/43188 ER - TY - JOUR AU - Lancioni, E. Giulio AU - Singh, N. Nirbhay AU - O?Reilly, F. Mark AU - Sigafoos, Jeff AU - Alberti, Gloria AU - Chiariello, Valeria AU - Desideri, Lorenzo AU - Buono, Serafino PY - 2023/3/24 TI - Low-Cost Technology-Aided Programs for Supporting People With Motor, Visual, and Intellectual Disabilities in Functional Forms of Occupation and Communication: Proof-of-Concept Study JO - JMIR Rehabil Assist Technol SP - e44239 VL - 10 KW - technology KW - smartphone KW - tablet KW - motor impairment KW - visual impairment KW - intellectual disability KW - leisure KW - communication KW - stories N2 - Background: People with motor, visual, and intellectual disabilities may have serious problems in independently accessing various forms of functional daily occupation and communication. Objective: The study was aimed at developing and assessing new, low-cost technology-aided programs to help people with motor or visual-motor and intellectual disabilities independently engage in functional forms of occupation and communication with distant partners. Methods: Two programs were set up using a smartphone interfaced with a 2-switch device and a tablet interfaced with 2 pressure sensors, respectively. Single-subject research designs were used to assess (1) the first program with 2 participants who were blind, had moderate hand control, and were interested in communicating with distant partners through voice messages; and (2) the second program with 2 participants who possessed functional vision, had no or poor hand control, and were interested in communicating with their partners through video calls. Both programs also supported 2 forms of occupational engagement, that is, choosing and accessing preferred leisure events consisting of songs and music videos, and listening to brief stories about relevant daily topics and answering questions related to those stories. Results: During the baseline phase (when only a conventional smartphone or tablet was available), 2 participants managed sporadic access to leisure or leisure and communication events. The other 2 participants did not show any independent leisure or communication engagement. During the intervention (when the technology-aided programs were used), all participants managed to independently engage in multiple leisure and communication events throughout the sessions and to listen to stories and answer story-related questions. Conclusions: The findings, which need to be interpreted with caution given the nature of the study and the small number of participants, seem to suggest that the new programs may be viable tools for helping people with motor or visual-motor and intellectual disabilities independently access leisure, communication, and other forms of functional engagement. UR - https://rehab.jmir.org/2023/1/e44239 UR - http://dx.doi.org/10.2196/44239 UR - http://www.ncbi.nlm.nih.gov/pubmed/36961483 ID - info:doi/10.2196/44239 ER - TY - JOUR AU - Lindsay, Sally AU - Thomson, Nicole AU - Moll, Sandra AU - Colantonio, Angela AU - Stinson, Jennifer PY - 2023/3/24 TI - A Web-Based Gender-Sensitive Educational Simulation on Vocational Rehabilitation for Service Providers Working With Youth With Disabilities: Pilot Evaluation JO - JMIR Form Res SP - e38540 VL - 7 KW - continuing professional development KW - CME KW - medical education KW - professional development KW - continuing education KW - gender-sensitive care KW - online KW - gender KW - education KW - simulator KW - simulation KW - clinician KW - pilot KW - youth KW - young KW - disabled KW - disability KW - child KW - pediatric KW - disabilities KW - trainee KW - community KW - training KW - tool KW - rehabilitation KW - feedback KW - survey N2 - Background: Although there is a need for gender-specific health care, especially within the context of vocational rehabilitation for youth with disabilities, clinicians, trainees, and community service providers commonly report lacking training in gender-sensitive approaches. Therefore, an educational tool designed for clinicians working with youth, that addresses how to approach such issues, could help clinicians to augment the care they provide. Objective: The objective of our study was to conduct a pilot evaluation of an educational simulation for health care and service providers focusing on gender-sensitive approaches within the context of supporting youth with disabilities in vocational rehabilitation. Methods: We conducted a survey from May to September 2021 to assess the relevance of the simulation content, preliminary perceived impact on gender-sensitive knowledge and confidence, and open-ended feedback of a web-based gender-sensitive educational simulation. A total of 12 health care providers from a variety of professions who had experience working with youth in the context of vocational rehabilitation participated in the survey (11 women and 1 man). Results: Most participants reported that the content of the simulation was relevant and comprehensive. The majority of participants reported that the simulation helped to increase their perceived knowledge or understanding of the topic, changed their perceived understanding of their intervention or approach, and informed their perceived confidence. Our qualitative findings from the open-ended questions highlighted three main themes: (1) relevance of the simulation content, (2) perceived impact for clinical practice (ie, gender-sensitive language and communication and building rapport with patients), and (3) perceived impact on organizational processes (ie, practices, policy, and privacy). Conclusions: Our educational simulation shows preliminary potential as an educational tool for service providers working with youth who have a disability within the context of vocational rehabilitation. Further research is needed to assess the impact of the tool with larger samples. UR - https://formative.jmir.org/2023/1/e38540 UR - http://dx.doi.org/10.2196/38540 UR - http://www.ncbi.nlm.nih.gov/pubmed/36961496 ID - info:doi/10.2196/38540 ER - TY - JOUR AU - Vanterpool, B. Karen AU - Gacki-Smith, Jessica AU - Kuramitsu, Brianna AU - Downey, Max AU - Nordstrom, J. Michelle AU - Luken, Michelle AU - Riggleman, Tiffany AU - Fichter, Shannon AU - Altema, Withney AU - Brucker, B. James AU - Cooney, M. Carisa AU - Dumanian, Gregory AU - Jensen, Sally AU - Levan, Macey AU - Tintle, M. Scott AU - Brandacher, Gerald AU - Gordon, J. Elisa PY - 2023/2/7 TI - A Patient-Centered Website (Within Reach) to Foster Informed Decision-making About Upper Extremity Vascularized Composite Allotransplantation: Development and Usability Study JO - JMIR Form Res SP - e44144 VL - 7 KW - hand transplantation KW - patient education KW - upper limb amputation KW - interviews KW - focus groups KW - disability KW - decision-making KW - accessible N2 - Background: Upper extremity (UE) vascularized composite allotransplantation (VCA; hand transplantation) is a reconstructive treatment option for patients with UE loss. Approximately 37 UE VCAs have been performed in the United States to date; thus, little is known about long-term psychosocial outcomes and whether the benefits outweigh the risks. To make an informed treatment decision, patients must understand the procedure, risks, and potential benefits of UE VCA. However, few educational resources are publicly available providing unbiased, comprehensive information about UE VCA. Objective: This paper described the development of a neutral, and accessible, educational website supporting informed decision-making about UE VCA as a treatment option for individuals with UE amputations. Methods: Website content development was informed by 9 focus groups conducted with individuals with UE amputations at 3 study sites. After initial website development, we conducted usability testing to identify ways to improve navigability, design, content, comprehension, and cultural sensitivity. Participants were administered the After-Scenario Questionnaire to assess user performance after completing navigational tasks, System Usability Scale to measure the perceived usability of the website, and Net Promoter Score to measure user satisfaction. Quantitative data were analyzed using descriptive statistics. Qualitative data were analyzed using rapid thematic analysis. Results: A total of 44 individuals with UE amputations participated in focus groups (n=37, 84%) and usability testing (n=14, 32%). Most participants in the focus groups and usability testing were male (24/37, 65% and 11/14, 79%, respectively) and White (27/37, 73% and 9/14, 64%, respectively), had unilateral limb loss (22/37, 59% and 12/14, 86%, respectively), and had mean ages of 48 (SD 9.2) and 50 (SD 12.0) years, respectively. Focus group results are organized into accessibility, website design, website development, website tone and values, sitemap, terminology, images and videos, and tables and graphics. Usability testing revealed that participants had a positive impression of the website. The mean After-Scenario Questionnaire score of 1.3 to 2.3 across task scenarios indicated high satisfaction with website usability, the mean System Usability Scale score of 88.9 indicated user satisfaction with website usability, and the mean Net Promoter Score of 9.6 indicated that users were enthusiastic and would likely refer individuals to the website. Conclusions: The findings suggest that our educational website, Within Reach, provides neutral, patient-centered information and may be a useful resource about UE VCA for individuals with UE amputations, their families, and health care professionals. Health care professionals may inform UE VCA candidates about Within Reach to supplement current VCA education processes. Within Reach serves as a resource about treatment options for patients preparing for scheduled or recovering from traumatic UE amputations. Future research should assess whether Within Reach improves knowledge about UE VCA and enhances informed decision-making about UE VCA as a treatment option. UR - https://formative.jmir.org/2023/1/e44144 UR - http://dx.doi.org/10.2196/44144 UR - http://www.ncbi.nlm.nih.gov/pubmed/36749618 ID - info:doi/10.2196/44144 ER - TY - JOUR AU - Eckert, Martina AU - Domingo Soria, Beatriz AU - Terroso Gil, Noelia PY - 2023/1/13 TI - Finding Effective Adjustment Levels for Upper Limb Exergames: Focus Group Study With Children With Physical Disabilities JO - JMIR Serious Games SP - e36110 VL - 11 KW - rehabilitation KW - physical therapy KW - cerebral palsy KW - obstetric brachial plexus palsy KW - serious games KW - exergames KW - Kinect N2 - Background: We developed the Blexer system consisting of a database and a web interface for therapists that can host different types of adaptive and personally configurable virtual reality exergames based on Kinect (Microsoft Corp) motion capture to provide entertaining exercises for children with motor disabilities. It allows for parameter adjustment and the monitoring of results remotely, thereby providing a useful tool to complement traditional physical therapy sessions with home exercises. Objective: The aim of this study was to observe the motor benefits achieved through the use of a video exergame and the importance and implications of correctly setting the game?s difficulty parameters. Methods: This was an observational case study of 6 children with different physical disabilities receiving physical therapy at school combined with the use of a fully configurable exergame under research that forms a part of the Blexer environment. The game integrates 4 repeatedly appearing upper limb exercises with individually adjustable difficulties (intermittent arm rising, arm forward and backward movement, rising and holding of one arm, and trunk control in all directions). The outcomes were 3 assessments of 2 efficacy measures: Box and Block Test and Jebsen Taylor Hand Function Test. Results: A total of 5 children with cerebral palsy (mean 8.4, SD 2.7 years; Gross Motor Function Classification II?2/5, 40%; III?2/5, 40%; and IV?1/5, 20%) and 1 child with obstetric brachial plexus palsy (aged 8 years; Mallet Classification III) received between 8 and 11 sessions of training (10-20 minutes per session), depending on age, motivation, and fatigue. Significant associations were observed between game parameter settings and improvements in motor function, on the one hand, and between the type of improvement and disability severity, on the other: with adjusted game parameters goal and time in the range of 70% to 100%, only less affected children improved in the Box and Block Test (+11 blocks vs ?1 block), and more affected children improved more in the Jebsen Taylor Hand Function Test (+90 seconds vs +27 seconds). Conclusions: When defining the difficulty parameters for an exergame, we suggest a classification in levels ranging from very easy to very hard. For practical use, we suggest setting the difficulty for the player to an easy or medium level rather than high-commitment goals, as this leads to a longer playtime with more fun and, therefore, seems to improve the results of the game and, consequently, mobility. UR - https://games.jmir.org/2023/1/e36110 UR - http://dx.doi.org/10.2196/36110 UR - http://www.ncbi.nlm.nih.gov/pubmed/36637882 ID - info:doi/10.2196/36110 ER - TY - JOUR AU - Cleland, Jenny AU - Hutchinson, Claire AU - Williams, H. Patricia A. AU - Manuel, Kisani AU - Laver, Kate PY - 2022/12/21 TI - Home Automation for Adults With Disability Following an Injury: Protocol for a Social Return on Investment Study JO - JMIR Res Protoc SP - e42493 VL - 11 IS - 12 KW - disability KW - serious injury KW - economic evaluation KW - home automation KW - long-term care KW - social return on investment KW - injury KW - technology KW - community KW - Australia KW - decision-making N2 - Background: People with disability following a serious injury require long-term care. The most common injuries resulting in long-term disability are spinal cord and acquired brain injuries. While the long-term effects are difficult to predict and will vary between individuals, the costs of care and recovery span well beyond the initial treatment phase and include long-term care. Long-term care is changing with the availability and advances in cost and function of technologies, such as home automation. ?Home automation? refers to technology that automates or remotely controls household functions. Home automation costs vastly differ, but home automation has the potential to positively impact the lives of people with disabilities. However, there is a dearth of evidence relating to the impact of home automation for people with a disability and few rigorous evaluations about the costs and return on investment. Objective: The purpose of this study is to describe the impact of home automation for people with long-term disability following a serious injury (such as a motor vehicle accident) using case studies, and by conducting an evaluation of the costs and outcomes for individuals, families, and the wider community using a Social Return on Investment (SROI) approach. Methods: SROI is a form of economic evaluation that develops a theory of change to examine the relationship among inputs, outputs, and outcomes and, in recent years, has gained popularity internationally, including in Australia. SROI has six phases: (1) identify scope and stakeholders, (2) map outcomes, (3) evidence outcomes and give them value, (4) establish impact, (5) calculate the SROI, and (6) report findings. Individuals with a disability who use home automation and key stakeholders will be interviewed. Stakeholders will be individuals involved in home automation for people with disabilities, such as allied health professionals, medical practitioners, equipment suppliers, engineers, and maintenance professionals. Users of home automation will be people who have a disability following a serious injury, have the capacity to provide consent, and have 1 or more elements of home automation. The impact of home automation will be established with financial proxies and appropriate discounts applied to avoid overestimating the social return. The SROI ratio will be calculated, and findings will be reported. Results: The project was funded in November 2021 by the Lifetime Support Authority. Recruitment is underway, and data collection is expected to be completed by October 2022. The final results of the study will be published in March 2023. Conclusions: To our knowledge, this study represents the first study in Australia and internationally to employ SROI to estimate the social, personal, and community outcomes of home automation for people with a disability following a serious injury. This research will provide valuable information for funders, consumers, researchers, and the public to guide and inform future decision-making. International Registered Report Identifier (IRRID): DERR1-10.2196/42493 UR - https://www.researchprotocols.org/2022/12/e42493 UR - http://dx.doi.org/10.2196/42493 UR - http://www.ncbi.nlm.nih.gov/pubmed/36542464 ID - info:doi/10.2196/42493 ER - TY - JOUR AU - Gruebner, Oliver AU - van Haasteren, Afua AU - Hug, Anna AU - Elayan, Suzanne AU - Sykora, Martin AU - Albanese, Emiliano AU - Naslund, John AU - Wolf, Markus AU - Fadda, Marta AU - von Rhein, Michael PY - 2022/12/6 TI - Digital Platform Uses for Help and Support Seeking of Parents With Children Affected by Disabilities: Scoping Review JO - J Med Internet Res SP - e37972 VL - 24 IS - 12 KW - digital place KW - pediatric diagnoses KW - conditions KW - disability KW - neuromuscular KW - information and support seeking KW - online KW - social media KW - peer support KW - lived experience KW - parents KW - children KW - youth KW - review KW - scoping review KW - trauma KW - caregivers N2 - Background: Receiving a diagnosis that leads to severe disability in childhood can cause a traumatic experience with long-lasting emotional stress for patients and family members. In recent decades, emerging digital technologies have transformed how patients or caregivers of persons with disabilities manage their health conditions. As a result, information (eg, on treatment and resources) has become widely available to patients and their families. Parents and other caregivers can use digital platforms such as websites or social media to derive social support, usually from other patients and caregivers who share their lived experiences, challenges, and successes on these platforms. However, gaps remain in our understanding of platforms that are most frequently used or preferred among parents and caregivers of children with disabilities. In particular, it is not clear what factors primarily drive or discourage engagement with these digital tools and what the main ethical considerations are in relation to these tools. Objective: We aimed to (1) identify prominent digital platforms used by parents or caregivers of children with disabilities; (2) explore the theoretical contexts and reasons for digital platform use, as well as the experiences made with using these platforms reported in the included studies; and (3) identify any privacy and ethical concerns emerging in the available literature in relation to the use of these platforms. Methods: We conducted a scoping review of 5 academic databases of English-language articles published within the last 10 years for diseases with childhood onset disability and self-help or parent/caregiver-led digital platforms. Results: We identified 17 papers in which digital platforms used by parents of affected children predominantly included social media elements but also search engines, health-related apps, and medical websites. Information retrieval and social support were the main reasons for their utilization. Nearly all studies were exploratory and applied either quantitative, qualitative, or mixed methods. The main ethical concerns for digital platform users included hampered access due to language barriers, privacy issues, and perceived suboptimal advice (eg, due to missing empathy of medical professionals). Older and non?college-educated individuals and ethnic minorities appeared less likely to access information online. Conclusions: This review showed that limited scientifically sound knowledge exists on digital platform use and needs in the context of disabling conditions in children, as the evidence consists mostly of exploratory studies. We could highlight that affected families seek information and support from digital platforms, as health care systems seem to be insufficient for satisfying knowledge and support needs through traditional channels. UR - https://www.jmir.org/2022/12/e37972 UR - http://dx.doi.org/10.2196/37972 UR - http://www.ncbi.nlm.nih.gov/pubmed/36472896 ID - info:doi/10.2196/37972 ER - TY - JOUR AU - Halkides, Heather AU - James, G. Tyler AU - McKee, M. Michael AU - Meade, A. Michelle AU - Moran, Christa AU - Park, Sophia PY - 2022/12/2 TI - Spotlighting Disability in a Major Electronic Health Record: Michigan Medicine?s Disability and Accommodations Tab JO - JMIR Form Res SP - e38003 VL - 6 IS - 12 KW - patients with disabilities KW - disability accommodations KW - electronic health records KW - patient-centered care KW - Affordable Care Act KW - Americans with Disabilities Act KW - disability KW - disabilities KW - affordable care KW - EHR KW - accommodation KW - minority KW - equity KW - accessibility KW - accessible KW - inclusive KW - inclusivity KW - health care KW - health service KW - environment KW - accommodate KW - reporting KW - data collection KW - barrier UR - https://formative.jmir.org/2022/12/e38003 UR - http://dx.doi.org/10.2196/38003 UR - http://www.ncbi.nlm.nih.gov/pubmed/36459406 ID - info:doi/10.2196/38003 ER - TY - JOUR AU - van Dam, Kirstin AU - Gielissen, Marieke AU - Reijnders, Rachelle AU - van der Poel, Agnes AU - Boon, Brigitte PY - 2022/11/3 TI - Experiences of Persons With Executive Dysfunction in Disability Care Using a Social Robot to Execute Daily Tasks and Increase the Feeling of Independence: Multiple-Case Study JO - JMIR Rehabil Assist Technol SP - e41313 VL - 9 IS - 4 KW - executive dysfunction KW - disability care KW - social robots KW - assistive technology KW - independence KW - daily tasks KW - executive function KW - rehabilitation KW - disability support KW - daily care KW - implementation N2 - Background: Executive functions are essential for independently navigating nearly all of our daily activities. Executive dysfunction often occurs as a result of a neurodevelopmental disorder. Persons with executive dysfunction experience challenges regarding independent execution of daily tasks. Social robots might support persons with executive dysfunction to execute daily tasks and promote their feeling of independence. Objective: This study aimed to study the impact of interacting with social robot Tessa on goal attainment in the execution of daily tasks and perceived independence of persons with executive dysfunction. Methods: In this multiple-case study, 18 participant?caregiver couples were followed up while using Tessa in the home environment for 3 months. Goal attainment on independently performing a self-determined goal was measured by the Goal Attainment Scale, and participant?caregiver couples were interviewed about their experience with their interaction with Tessa and how they perceived Tessa?s impact on their independence. Results: In total, 11 (61%) participants reached their goal after 6 weeks and maintained their goal after 3 months. During the study period, 2 participant?caregiver couples withdrew because of mismatch with Tessa. Participants set goals in the following domains: execution of household tasks; intake of food, water, or medication; being ready in time for an appointment; going to bed or getting out of bed on time; personal care; and exercise. Participants perceived that Tessa increased the feeling of independence by generating more structure, stimulation, and self-direction. Participant?caregiver couples reported that the auditive information provided by Tessa was more effective in coping with executive dysfunction compared to their initial approaches using visual information, and the use of Tessa had a positive impact on their relationship. Conclusions: This study paid ample time and attention to the implementation of a social robot in daily care practice. The encouraging findings support the use of social robot Tessa for the execution of daily tasks and increasing independence of persons with executive dysfunction in disability care. UR - https://rehab.jmir.org/2022/4/e41313 UR - http://dx.doi.org/10.2196/41313 UR - http://www.ncbi.nlm.nih.gov/pubmed/36326800 ID - info:doi/10.2196/41313 ER - TY - JOUR AU - Prescott, Mike AU - Gamache, Stéphanie AU - Mortenson, Ben W. AU - Best, L. Krista AU - Grandisson, Marie AU - Mostafavi, Abolfazl Mir AU - Labbé, Delphine AU - Morales, Ernesto AU - Mahmood, Atiya AU - Borisoff, Jaimie AU - Sawatzky, Bonita AU - Miller, C. William AU - Bulk, Yvonne Laura AU - Robillard, M. Julie AU - Routhier, François PY - 2022/10/7 TI - Providing Accessible ReCreation Outdoors?User-Driven Research on Standards: Protocol for Mobile and Web-Based Interviews for Winter Assessments JO - JMIR Res Protoc SP - e38715 VL - 11 IS - 10 KW - parks KW - accessibility KW - standards KW - user-oriented research KW - winter KW - disability KW - access KW - participatory KW - national parks KW - barriers KW - participation KW - Canada KW - national park KW - outdoor KW - activity KW - standard KW - interview KW - safe KW - virtual KW - summer KW - data KW - mix-method KW - development N2 - Background: Although there have been recent efforts to improve access to Canadian national parks, many remain not fully accessible to people with disabilities. Winter conditions, in particular, present challenges that limit their participation in outdoor activities. Objective: This study aimed to develop a novel method to assess park access during winter, which will inform recommendations for national park standards to meet the needs of all park visitors (regardless of ability) during winter conditions. Methods: A larger participatory mixed methods research project exploring park access was adapted. A 3-phase approach has already been proposed to achieve the study objectives. In the first phase, a scoping review of the existing accessibility standards will be conducted. In the second phase, objective audits of trails and features in 6 parks, 3 in western Canada and 3 in eastern Canada, will be conducted, as well as mobile interviews with 24 various participants in each region regarding their experiences of and recommendations for improving the park?s accessibility. In the final phase, a Delphi participatory consensus development process will be used, based on the data gathered in the first 2 phases, to prioritize recommendations for standards. This paper will focus on the second phase of the study, specifically on whether the in-person winter mobile interviews (ie, walking and wheeling interviews) with people who have a wide range of disabilities while visiting 3 parks in 2 provinces were modified. Changes were made to accommodate the extreme winter weather conditions in Quebec while using safe and informative data collection methods. Results: In Quebec, one park, where winter conditions are safer, has been assessed in person (n=4). Web-based interviews were used to facilitate the assessment of other winter and summer conditions in two other parks (n=8). Winter and web-based interviews were completed in April 2022. Data are currently being collected and analyzed, and results will be completed by December 2022. Conclusions: We expect that adapting the protocol to gather further information on winter conditions and access to parks will provide high-quality and rich data to better inform park access standards. This participatory mixed methods research will inform the development of park standards that consider the accessibility needs of all people. International Registered Report Identifier (IRRID): DERR1-10.2196/38715 UR - https://www.researchprotocols.org/2022/10/e38715 UR - http://dx.doi.org/10.2196/38715 UR - http://www.ncbi.nlm.nih.gov/pubmed/36206037 ID - info:doi/10.2196/38715 ER - TY - JOUR AU - Selick, Avra AU - Durbin, Janet AU - Hamdani, Yani AU - Rayner, Jennifer AU - Lunsky, Yona PY - 2022/8/22 TI - Accessibility of Virtual Primary Care for Adults With Intellectual and Developmental Disabilities During the COVID-19 Pandemic: Qualitative Study JO - JMIR Form Res SP - e38916 VL - 6 IS - 8 KW - COVID-19 KW - intellectual disability KW - developmental disability KW - qualitative KW - telemedicine KW - virtual care KW - primary care N2 - Background: The COVID-19 pandemic has led to an unprecedented increase in the delivery of virtual primary care. Adults with intellectual and developmental disabilities (IDDs) have complex health care needs, and little is known about the value and appropriateness of virtual care for this patient population. Objective: The aim of this study was to explore the accessibility of virtual primary care for patients with IDDs during the pandemic. Methods: We conducted semistructured interviews with 38 participants in Ontario, Canada between March and November 2021. A maximum variation sampling strategy was used to achieve a diverse sample including 11 adults with IDDs, 13 family caregivers, 5 IDD support staff members, and 9 primary care physicians. An iterative mixed inductive and deductive thematic analysis approach was used to code the data and synthesize higher-level themes. The analysis was informed by the Levesque Patient-Centered Access to Health Care Framework. Results: We identified themes related to 4 of 5 access-to-care dimensions that highlighted both the benefits and challenges of virtual care for adults with IDDs. The benefits included saving time spent traveling and waiting; avoiding anxiety and challenging behavior for patients who struggle to attend in-person visits; allowing caregivers who live far away from their loved ones to participate; reducing illness transmission; and allowing health care providers to see patients in their home environments. The challenges included lack of access to necessary technology, lack of comfort or skill using technology, and lack of nonverbal communication; difficulty engaging and establishing rapport; patient exclusion from the health care encounter; and concerns about privacy and confidentiality. An overarching theme was that ?one size does not fit all,? and the accessibility of virtual care was dependent on the interaction between the following 5 categories of factors: patient characteristics, patient context, caregiver characteristics, service context, and reason for a particular primary care visit. Though virtual care was not always appropriate, in some cases, it dramatically improved patients? abilities to access necessary health care. Conclusions: This study suggests that a flexible patient-centered system including multiple delivery modalities is needed to ensure all patients have access to primary care. Implementing this system will require improved virtual care platforms, access to technology for patients and caregivers, training for primary care providers, and appropriately aligned primary care funding models. UR - https://formative.jmir.org/2022/8/e38916 UR - http://dx.doi.org/10.2196/38916 UR - http://www.ncbi.nlm.nih.gov/pubmed/35951444 ID - info:doi/10.2196/38916 ER - TY - JOUR AU - Taylor, G. Leah AU - Vanderloo, M. Leigh AU - Arbour-Nicitopoulos, P. Kelly AU - Leo, Jennifer AU - Gilliland, Jason AU - Tucker, Patricia PY - 2022/7/22 TI - Playground Inclusivity for Children With a Disability: Protocol for a Scoping Review JO - JMIR Res Protoc SP - e37312 VL - 11 IS - 7 KW - playground KW - inclusion KW - children KW - disability KW - scoping review KW - protocol KW - youth KW - inclusivity KW - participation KW - young KW - accessibility KW - design KW - structure KW - application N2 - Background: Although playgrounds are designed to promote outdoor play, children with disabilities may be unable to engage in these spaces due to intrinsic and extrinsic factors. Previous research has examined inclusive/accessible playground design when developing new playgrounds; however, it is unclear if there is a best-practice tool for evaluating the inclusivity of existing playground structures. Objective: A scoping review of both peer-reviewed and grey literature will be employed to explore evaluation tools for playground inclusivity, to enable the participation of children with disabilities. Methods: The conduct of this study will adhere to the PRISMA-ScR (Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews) guidelines. A search for peer-reviewed research studies will be conducted in the following electronic databases: MEDLINE, Scopus, CINAHL, and Embase. Grey literature will be examined via a three-step process: (1) a search in the Canadian Health Research Collection Database; (2) a targeted Google search; and (3) reference list searching. Titles, abstracts, keywords, and full texts of identified studies will be independently screened for inclusion by two reviewers. A synthesis of included articles will describe the publication and auditing tool details. A summary of the findings will highlight the types of playgrounds measured, types of disability considered, measures of inclusion used, and psychometric properties. Results: Database searches for peer-reviewed articles were completed in December 2021. A total of 1471 unique records were returned after the removal of 559 duplicate records. Full texts of 167 studies meeting eligibility criteria will be reviewed. The peer-reviewed research search will guide the grey literature search. The scoping review is planned for completion in 2022. Conclusions: A rigorous search of the literature will determine the availability of tools for evaluating existing playground structures for the inclusivity of children with disabilities. The results will inform recommendations on tool applications, and applicable knowledge translation activities. International Registered Report Identifier (IRRID): DERR1-10.2196/37312 UR - https://www.researchprotocols.org/2022/7/e37312 UR - http://dx.doi.org/10.2196/37312 UR - http://www.ncbi.nlm.nih.gov/pubmed/35867380 ID - info:doi/10.2196/37312 ER - TY - JOUR AU - Milne-Ives, Madison AU - Shankar, Rohit AU - Goodley, Dan AU - Lamb, Kirsten AU - Laugharne, Richard AU - Harding, Tracey AU - Meinert, Edward PY - 2022/5/4 TI - Humanizing Health and Social Care Support for People With Intellectual and Developmental Disabilities: Protocol for a Scoping Review JO - JMIR Res Protoc SP - e31720 VL - 11 IS - 5 KW - developmental disabilities KW - intellectual disability KW - delivery of health care KW - patient care management KW - social work KW - social support KW - patient-centered care KW - empathy KW - respect KW - social care N2 - Background: Health care is shifting toward a more person-centered model; however, people with intellectual and developmental disabilities can still experience difficulties in accessing equitable health care. Given these difficulties, it is important to consider how humanizing principles, such as empathy and respect, can be best incorporated into health and social care practices for people with intellectual and developmental disabilities to ensure that they are receiving equitable treatment and support. Objective: The purpose of our scoping review is to provide an overview of the current research landscape and knowledge gaps regarding the development and implementation of interventions based on humanizing principles that aim to improve health and social care practices for people with intellectual and developmental disabilities. Methods: The PRISMA-ScR (Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews) and PICOS (Population, Intervention, Comparator, Outcome, and Study) frameworks will be used to structure the review. A total of 6 databases (PubMed, MEDLINE, Embase, CINAHL, PsycINFO, and Web of Science) will be searched for English articles published in the previous 10 years that describe or evaluate health and social care practice interventions underpinned by the humanizing principles of empathy, compassion, dignity, and respect. Two reviewers will screen and select references based on the eligibility criteria and extract the data into a predetermined form. A descriptive analysis will be conducted to summarize the results and provide an overview of interventions in the following three main care areas: health care, social care, and informal social support. Results: The results will be included in the scoping review, which is expected to begin in October 2022 and be completed and submitted for publication by January 2023. Conclusions: Our scoping review will summarize the state of the field of interventions that are using humanizing principles to improve health and social care for adults with intellectual and developmental disabilities. International Registered Report Identifier (IRRID): PRR1-10.2196/31720 UR - https://www.researchprotocols.org/2022/5/e31720 UR - http://dx.doi.org/10.2196/31720 UR - http://www.ncbi.nlm.nih.gov/pubmed/35507388 ID - info:doi/10.2196/31720 ER - TY - JOUR AU - Wu, Wen-Lan AU - Huang, Yu-Ling AU - Liang, Jing-Min AU - Chen, Chia-Hsin AU - Wang, Chih-Chung AU - Ho, Wen-Hsien PY - 2022/4/15 TI - Interactive Digital Game for Improving Visual?Perceptual Defects in Children With a Developmental Disability: Randomized Controlled Trial JO - JMIR Serious Games SP - e34756 VL - 10 IS - 2 KW - interactive digital game KW - visual?perceptual defect KW - developmental disability KW - Children KW - Test of Visual Perceptual Skills KW - rehabilitation N2 - Background: Visual?perceptual defects in children can negatively affect their ability to perform activities of daily living. Conventional rehabilitation training for correcting visual?perceptual defects has limited training patterns and limited interactivity, which makes motivation difficult to sustain. Objective: We aimed to develop and evaluate an interactive digital game system for correcting visual?perceptual defects and evaluate its effectiveness. Methods: Participants were children aged 5 to 10 years with a diagnosis of visual?perceptual defect associated with a developmental disability. The children were randomized into a digital game group who received the traditional course of rehabilitation combined with an interactive digital game intervention (n=12) and a standard rehabilitation group (n=11) who only received the traditional course of rehabilitation. Each group underwent rehabilitation once a week for 4 weeks. Overall improvement in Test of Visual Perceptual Skills 3rd edition (TVPS-3) score and overall improvement in performance in the interactive digital game were evaluated. Parents and therapists were asked to complete a satisfaction questionnaire. Results: After 4 weeks, the TVPS-3 score had significantly increased (P=.002) in the digital game group (pre: mean 41.67, SD 13.88; post: 61.50, SD 21.64). In the standard rehabilitation group, the TVPS-3 score also increased, but the increase was not statistically significant (P=.58). Additionally, TVPS-3 score increases were significantly larger for the digital game group compared with those for the standard rehabilitation group (P=.005). Moreover, both parents and therapists were highly satisfied with the system. All 5 themes of satisfaction had mean scores higher than 4 in a 5-point scale questionnaire (mean 4.30, SD 0.56). Conclusions: The system has potential applications for improving visual?perceptual function in children undergoing medical rehabilitation for developmental disability. Trial Registration: ClinicalTrials.gov NCT05016492; http://clinicaltrials.gov/ct2/show/NCT05016492 UR - https://games.jmir.org/2022/2/e34756 UR - http://dx.doi.org/10.2196/34756 UR - http://www.ncbi.nlm.nih.gov/pubmed/35436215 ID - info:doi/10.2196/34756 ER - TY - JOUR AU - Michalski, Carlo Stefan AU - Szpak, Ancret AU - Ellison, Caroline AU - Cornish, Rowena AU - Loetscher, Tobias PY - 2022/4/7 TI - Using Virtual Reality to Improve Classroom Behavior in People With Down Syndrome: Within-Subjects Experimental Design JO - JMIR Serious Games SP - e34373 VL - 10 IS - 2 KW - virtual reality KW - Down syndrome KW - intellectual disability KW - drawing KW - art KW - behavior KW - mood KW - attention KW - classroom KW - self-report N2 - Background: People with Down syndrome face various learning challenges. Introducing new and enjoyable experiences in learning settings may improve learning outcomes. Immersive and interactive technologies such as virtual reality can be used to deliver rich visual experiences in classrooms. Objective: The aim of this study was to investigate the feasibility and benefits of virtual reality exposure for people with Down syndrome in learning settings. Methods: To address this aim, we used a within-subjects design to assess the effect of a brief virtual reality drawing experience and conventional drawing experience on subsequent behavior in 16 participants. Results: Large positive effects were found for virtual reality drawing (t15=5.020, P<.001) and conventional drawing (t15=3.720, P=.002) in improving subsequent behavior in a learning setting. Irrespective of the intervention, the participant?s mood, attention, and overall behavior significantly improved. No significant differences were found between the interventions (t15=?0.648; P=.53). Conclusions: This study?s results are encouraging for researchers and educators interested in using virtual reality for people with Down syndrome, as virtual reality was found to be highly feasible. Recommendations are made for researchers and educators interested in providing virtual reality experiences for people with Down syndrome. UR - https://games.jmir.org/2022/2/e34373 UR - http://dx.doi.org/10.2196/34373 UR - http://www.ncbi.nlm.nih.gov/pubmed/35124567 ID - info:doi/10.2196/34373 ER - TY - JOUR AU - Yang, Eunjin AU - Lee, Hee Kyung PY - 2022/4/4 TI - The Moderating Effects of Disability on Mobile Internet Use Among Older Adults: Population-Based Cross-sectional Study JO - J Med Internet Res SP - e37127 VL - 24 IS - 4 KW - older adults KW - people with disabilities KW - digital divide KW - mobile phone use N2 - Background: The preferred devices to access the internet are changing from personal computers to mobile devices, and the number of older adults with or without disabilities is rapidly increasing in an aging society. However, little is known about the moderating effects of disability on mobile internet use among older adults. Objective: This study aimed to examine the levels of mobile internet use and factors associated with this use among older adults according to their disabilities. In addition, moderating effects of disability on mobile internet use were investigated. Methods: This study consisted of a secondary data analysis using the 2020 Digital Divide Survey conducted in South Korea. The single inclusion criterion was participants being aged 55 years or older; accordingly, 2243 people without disabilities and 1386 people with disabilities were included in the study. Multiple regression analyses considering complex sample designs were conducted to identify mobile internet use factors and to test the moderating effects of disability on mobile internet use. Results: Older adults with disabilities used mobile internet less than older adults without disabilities. However, disability status had moderating effects on the relationships between mobile internet use and (1) operational skills regarding mobile devices (B=0.31, P=.004), (2) internet use skills (B=1.46, P<.001), (3) motivation to use digital devices (B=0.46, P=.01), and (4) attitude toward new technology (B=0.50, P=.002). The results revealed that these positive relationships were stronger among older adults with disabilities than among adults without disabilities. Conclusions: Although older adults and people with disabilities are considered vulnerable populations regarding technology adoption, disability creates a stronger association between several determinants and actual mobile internet use. Therefore, policy makers and practitioners should pay attention to older adults with disabilities to deliver appropriate information-literacy education. Older adults with disabilities could be the primary beneficiaries of mobile services and new technology. UR - https://www.jmir.org/2022/4/e37127 UR - http://dx.doi.org/10.2196/37127 UR - http://www.ncbi.nlm.nih.gov/pubmed/35377329 ID - info:doi/10.2196/37127 ER - TY - JOUR AU - Prescott, Mike AU - Routhier, François AU - Labbé, Delphine AU - Grandisson, Marie AU - Mahmood, Atiya AU - Morales, Ernesto AU - Best, L. Krista AU - Mostafavi, Abolfazl Mir AU - Borisoff, Jaimie AU - Gamache, Stéphanie AU - Sawatzky, Bonita AU - Miller, C. William AU - Bulk, Yvonne Laura AU - Robillard, M. Julie AU - Jenkins, Hailey-Thomas AU - Seetharaman, Kishore AU - Mortenson, Ben W. PY - 2022/3/31 TI - Providing Accessible Recreation Outdoors?User-Driven Research on Standards (PARCOURS): Protocol for a Multiphase Study JO - JMIR Res Protoc SP - e33611 VL - 11 IS - 3 KW - parks KW - accessibility KW - standards KW - user-oriented research N2 - Background: Canada?s national parks are world-renowned. However, despite recent attempts to improve access, many are not accessible to people with disabilities. With the advent of provincial and federal legislation, standards are being developed to assist with the design and management of parks. Objective: The overarching objective of this study is to inform accessibility standards for federal parks that meet the needs of all park visitors, regardless of ability. The specific objectives of this study are to identify park accessibility standards that exist internationally, identify the accessibility challenges that people with disabilities face in park environments, and prioritize and recommend accessibility standards for national parks. Methods: A 3-phase approach will be used to achieve the study objectives. In the first phase, a scoping review of the existing accessibility standards will be conducted. The second phase will include objective audits of trails and features in 6 parks, 3 in western Canada and 3 in eastern Canada, as well as mobile interviews with 24 diverse participants in each region regarding their experiences of and recommendations for improving the park?s accessibility. In the final phase, a Delphi participatory consensus development process will be used, based on the data gathered in the first 2 phases, to prioritize recommendations for standards. Results: We expect to find gaps in existing standards that do not account for the diverse range of accessibility requirements that people with disabilities have for visiting parks. We also expect to find that existing standards, on their own, may not be enough to ensure equitable access to all the experiences and amenities that parks have to offer. Development of subsequent guidelines and best practices may be necessary to address complex scenarios for which standards may not be the best approach to ensuring accessibility. Conclusions: The participatory and mixed methods approaches used in this study will provide rich insights for developing accessible park standards that consider the diverse needs of people with disabilities. The findings will also support the development or enhancement of park standards at all levels of government. International Registered Report Identifier (IRRID): DERR1-10.2196/33611 UR - https://www.researchprotocols.org/2022/3/e33611 UR - http://dx.doi.org/10.2196/33611 UR - http://www.ncbi.nlm.nih.gov/pubmed/35357324 ID - info:doi/10.2196/33611 ER - TY - JOUR AU - Gulde, Philipp AU - Rieckmann, Peter PY - 2022/3/17 TI - The Association Between Actigraphy-Derived Behavioral Clusters and Self-Reported Fatigue in Persons With Multiple Sclerosis: Cross-sectional Study JO - JMIR Rehabil Assist Technol SP - e31164 VL - 9 IS - 1 KW - multiple sclerosis KW - actigraphy KW - cluster analysis KW - fatigue KW - physical activity KW - neurology KW - neurorehabilitation KW - rehabilitation KW - digital health KW - health technology KW - digital tools N2 - Background: Persons with multiple sclerosis frequently report increased levels of fatigue and fatigability. However, behavioral surrogates that are strongly associated with self-reports are lacking, which limits research and treatment. Objective: The aim of this study was to derive distinct behavioral syndromes that are reflected by self-reports concerning fatigue and fatigability. Methods: We collected actigraphic data of 30 persons with multiple sclerosis over a period of 1 week during an inpatient stay at a neurorehabilitation facility. Further, participants completed the German fatigue severity scale. A principal component analysis of actigraphic parameters was performed to extract the latent component levels of behaviors that reflect fatigue (quantity of activity) and fatigability (fragmentation of activity). The resulting components were used in a cluster analysis. Results: Analyses suggested 3 clusters, one with high activity (d=0.65-1.57) and low clinical disability levels (d=0.91-1.39), one with high levels of sedentary behavior (d=1.06-1.58), and one with strong activity fragmentation (d=1.39-1.94). The cluster with high levels of sedentary behavior further revealed strong differences from the other clusters concerning participants? reported levels of fatigue (d=0.99-1.28). Conclusions: Cluster analysis data proved to be feasible to meaningfully differentiate between different behavioral syndromes. Self-reports reflected the different behavioral syndromes strongly. Testing of additional domains (eg, volition or processing speed) and assessments during everyday life seem warranted to better understand the origins of reported fatigue symptomatology. UR - https://rehab.jmir.org/2022/1/e31164 UR - http://dx.doi.org/10.2196/31164 UR - http://www.ncbi.nlm.nih.gov/pubmed/35297774 ID - info:doi/10.2196/31164 ER - TY - JOUR AU - Sutton, Lynsey AU - Bell, Elliot AU - Every-Palmer, Susanna AU - Weatherall, Mark AU - Skirrow, Paul PY - 2022/3/17 TI - Survivorship of Patients After Long Intensive Care Stay With Exploration and Experience in a New Zealand Cohort (SPLIT ENZ): Protocol for a Mixed Methods Study JO - JMIR Res Protoc SP - e35936 VL - 11 IS - 3 KW - COVID-19 KW - critical illness KW - disability KW - intensive care unit KW - survivorship KW - Post Intensive Care Syndrome N2 - Background: Post Intensive Care Syndrome (PICS) was defined by the Society of Critical Care Medicine in 2012 with subsequent international research highlighting poor long-term outcomes; reduced quality of life; and impairments, for survivors of critical illness. To date, there has been no published research on the long-term outcomes of survivors of critical illness in New Zealand. Objective: The aim of this study is to explore long-term outcomes after critical illness in New Zealand. The primary objectives are to describe and quantify symptoms and disability, explore possible risk factors, and to identify unmet needs in survivors of critical illness. Methods: This will be a mixed methods study with 2 components. First, a prospective cohort study of approximately 100 participants with critical illness will be followed up at 1, 6, and 12 months after hospital discharge. The primary outcome will be disability assessed using the World Health Organization Disability Assessment Scale 2.0. Secondary outcomes will focus on mental health using the Hospital Anxiety and Depression Scale and the Impact of Events Scale-revised, cognitive function using the Montreal Cognitive Assessment (Montreal Cognitive Assessment?BLIND), and health-related quality of life using the European Quality of Life-Five Dimension-Five Level. The second element of the study will use qualitative grounded theory methods to explore participants experiences of recovery and highlight unmet needs. Results: This study was approved by the New Zealand Northern A Health and Disability Ethics Committee on August 16, 2021 (21/NTA/107), and has been registered with the Australian New Zealand Clinical Trials Registry on October 5, 2021. SPLIT ENZ is due to start recruitment in early 2022, aiming to enroll 125 patients over 2 years. Data collection is estimated to be completed by 2024-2025 and will be published once all data are available for reporting. Conclusions: Although international research has identified the prevalence of PICS and the extent of disability in survivors of critical illness, there is no published research in New Zealand. Research in this field is particularly pressing in the context of COVID-19, an illness that may include PICS in its sequelae. Trial Registration: Australian New Zealand Clinical Trials Registry ACTRN1262100133588; https://www.anzctr.org.au/Trial/Registration/TrialReview.aspx?id=382566&showOriginal=true&isReview=true International Registered Report Identifier (IRRID): PRR1-10.2196/35936 UR - https://www.researchprotocols.org/2022/3/e35936 UR - http://dx.doi.org/10.2196/35936 UR - http://www.ncbi.nlm.nih.gov/pubmed/35297773 ID - info:doi/10.2196/35936 ER - TY - JOUR AU - Ward, E. Rebecca AU - Setiawan, Agus I. Made AU - Quinby, Eleanor AU - Fair, Melva AU - Ambadar, Zara AU - Parmanto, Bambang AU - Dicianno, E. Brad PY - 2022/3/4 TI - Mobile Health to Support Community-Integration of Individuals With Disabilities Using iMHere 2.0: Focus Group Study JO - JMIR Hum Factors SP - e31376 VL - 9 IS - 1 KW - community integration KW - self-care KW - mobile health KW - smartphone KW - rehabilitation KW - disability KW - mobile phone N2 - Background: Mobile health (mHealth) systems that support self-management can improve medical, functional, and psychosocial outcomes for individuals with disabilities and chronic conditions. The mHealth systems can potentially be expanded to support community integration. Objective: The purposes of this study were to (1) partner with a community-based organization that supports community integration of individuals with disabilities; (2) identify software requirements needed to support community participation; and (3) iteratively refine an existing mHealth application to include new requirements. Methods: Community Living and Support Services (CLASS), a nonprofit organization that serves individuals with disabilities in Pittsburgh, Pennsylvania, was identified as the focus group for this study. Key stakeholders within the Community Partners Program at CLASS proposed design requirements for an existing mHealth application, Interactive Mobile Health and Rehabilitation (iMHere) 2.0, that has been used to support self-management. Results: We gathered qualitative data from a focus group composed of CLASS members to develop and iteratively revise iMHere 2.0 to include new modules and features to support community integration. A caregiver app was also developed. The new system contains features to support finance, transportation, client and caregiver communication, calendar and checklist management, upcoming medical and nonmedical appointments, social engagement, pain management, and access to a personal profile. Modifications were made to the following existing modules: education, mood, personal health record, goals, medications, and nutrition. Conclusions: A successful partnership with a community-based organization that supports individuals with disabilities resulted in a newly designed mHealth system with features to support community integration. UR - https://humanfactors.jmir.org/2022/1/e31376 UR - http://dx.doi.org/10.2196/31376 UR - http://www.ncbi.nlm.nih.gov/pubmed/35254274 ID - info:doi/10.2196/31376 ER - TY - JOUR AU - Yoo, Yejong Paul AU - Movahed, Mehrnoosh AU - Rue, Ishana AU - Santos, Dos Carlos Denner AU - Majnemer, Annette AU - Shikako, Keiko PY - 2022/2/25 TI - Changes in Use of a Leisure Activity Mobile App for Children With Disabilities During the COVID-19 Pandemic: Retrospective Study JO - JMIR Pediatr Parent SP - e32274 VL - 5 IS - 1 KW - COVID-19 KW - participation KW - childhood disability KW - online leisure KW - app engagement KW - mHealth KW - children KW - parents KW - mobile apps KW - mobile health KW - digital health KW - pandemic KW - online leisure activities KW - user engagement KW - app usability N2 - Background: Participation in leisure activities is essential for child development and a human right as per the United Nations Convention on the Rights of the Child. Children with disabilities face several restrictions when participating in leisure activities as compared to same age peers without disabilities. Access to information about accessible, inclusive leisure activities is one of the barriers limiting participation, and one potential health promotion strategy is to provide access to information to increase participation. The Jooay App is a mobile app listing such activities in Canada and Australia. With the COVID-19 global pandemic and subsequent public health measures, most community-based facilities providing the activities listed on Jooay were closed. The app therefore started listing online activities offered with the expectation of continuing to provide information for families and understanding the extent to which users relied on the mobile app as a tool to identify new safe leisure opportunities. Objective: This study aims to describe the engagement of the Jooay app before and during COVID-19, and to estimate the extent to which the listing of online activities was related to the engagement of the Jooay app. Methods: We conducted a retrospective study comparing Jooay app use between March 2020 and February 2021 to the engagement between March 2019 and February 2020 by Jooay users. Spearman rank correlations were carried out to identify associations between the activities listed and the users? engagement from May 2020 to February 2021. Results: Active engagement with the Jooay app from March 2020 to February 2021 dropped by an average of 135 engagements (64.2%) compared to engagements in 2019-2020. The largest monthly drop in engagement was observed in May 2020 by 239 engagements (88.8%). There was a strong positive correlation between the number of active users and the number of online activities listed on the app (rs=0.900). Conclusions: The engagement with the Jooay App presented an expected decrease during the first wave of the COVID-19 pandemic. The addition of online adapted leisure activities to the app?s listings during the pandemic increased app use. Access to information about inclusive activities is a barrier for children with disabilities to engage in leisure. Mobile health solutions can be responsive to contextual factors and consider the social determinants of health such as socioeconomic and public health emergency issues that can impact the participation of vulnerable populations such as children with disabilities and help eliminate barriers to participation. The provision of online leisure opportunities during the pandemic could facilitate participation in these activities during the pandemic and beyond, which is essential and beneficial for the physical and mental well-being of children with disabilities and their families. UR - https://pediatrics.jmir.org/2022/1/e32274 UR - http://dx.doi.org/10.2196/32274 UR - http://www.ncbi.nlm.nih.gov/pubmed/35100129 ID - info:doi/10.2196/32274 ER - TY - JOUR AU - Chowdhary, Kuntal AU - Yu, Xie Daihua AU - Pramana, Gede AU - Mesoros, Matthew AU - Fairman, Andrea AU - Dicianno, Edward Brad AU - Parmanto, Bambang PY - 2022/2/24 TI - User-Centered Design to Enhance mHealth Systems for Individuals With Dexterity Impairments: Accessibility and Usability Study JO - JMIR Hum Factors SP - e23794 VL - 9 IS - 1 KW - cellular phone KW - mobile apps KW - telemedicine KW - adaptive mHealth KW - rehabilitation KW - self-care KW - spinal cord injury KW - spina bifida KW - chronic disease KW - persons with disability KW - accessibility KW - dexterity impairments KW - mobile phone N2 - Background: Mobile health systems have been shown to be useful in supporting self-management by promoting adherence to schedules and longitudinal health interventions, especially in people with disabilities. The Interactive Mobile Health and Rehabilitation (iMHere) system was developed to empower people with disabilities and those with chronic conditions with supports needed for self-management and independent living. Since the first iteration of the iMHere 1.0 app, several studies have evaluated the accessibility and usability of the system. Potential opportunities to improve and simplify the user interface were identified, and the iMHere modules were redesigned accordingly. Objective: In this study, we aim to evaluate the usability of the redesigned modules within the iMHere 1.0 app. Methods: We evaluated the original and redesigned iMHere modules?MyMeds and SkinCare. The Purdue Pegboard Test was administered to assess the participants? dexterity levels. Participants were then asked to perform a set of tasks using both the original and redesigned MyMeds and SkinCare modules to assess their efficiency and effectiveness. Usability was measured using the Telehealth Usability Questionnaire to evaluate 10 new accessibility features that were added to the redesigned app. Participants were also asked which version they preferred. Results: In total, 24 participants with disabilities and varying degrees of dexterity impairments completed the entire study protocol. Participants displayed improved efficiency and effectiveness when using the redesigned modules compared with the original modules. The participants also reported improved usability and preferred the redesigned modules. Conclusions: This study demonstrated that the iMHere system became more efficient, effective, and usable for individuals with dexterity impairments after redesigning it according to user-centered principles. UR - https://humanfactors.jmir.org/2022/1/e23794 UR - http://dx.doi.org/10.2196/23794 UR - http://www.ncbi.nlm.nih.gov/pubmed/35200144 ID - info:doi/10.2196/23794 ER - TY - JOUR AU - van Kessel, Robin AU - Hrzic, Rok AU - O'Nuallain, Ella AU - Weir, Elizabeth AU - Wong, Han Brian Li AU - Anderson, Michael AU - Baron-Cohen, Simon AU - Mossialos, Elias PY - 2022/2/22 TI - Digital Health Paradox: International Policy Perspectives to Address Increased Health Inequalities for People Living With Disabilities JO - J Med Internet Res SP - e33819 VL - 24 IS - 2 KW - digital health KW - eHealth KW - health policy KW - health systems KW - disability KW - inclusion KW - digital technologies KW - people living with disabilities UR - https://www.jmir.org/2022/2/e33819 UR - http://dx.doi.org/10.2196/33819 UR - http://www.ncbi.nlm.nih.gov/pubmed/35191848 ID - info:doi/10.2196/33819 ER - TY - JOUR AU - Teleman, Britta AU - Svedberg, Petra AU - Larsson, Ingrid AU - Karlsson, Caroline AU - Nygren, M. Jens PY - 2022/1/6 TI - A Norm-Creative Method for Co-constructing Personas With Children With Disabilities: Multiphase Design Study JO - J Particip Med SP - e29743 VL - 14 IS - 1 KW - disability KW - children KW - norm-critical KW - participatory design KW - personas KW - co-produced care KW - health care N2 - Background: An increase in the demand for child participation in health care requires tools that enable and empower children to be involved in the co-production of their own care. The development of such tools should involve children, but participatory design and research with children have challenges, in particular, when involving children with disabilities where a low level of participation is the norm. Norm-creative and participatory approaches may bring more effective design solutions for this group. ?Personas? is a methodology for increasing user perspectives in design and offers representation when users are absent. However, research on participatory persona generation in this context is limited. Objective: The objective of this study was to investigate how norm-creative and participatory design approaches can be integrated in a persona generation method to suit children with disabilities in the design of games for health that target this group. Methods: The method development involved interview transcripts and image-based workshops. Sixteen children with various disabilities participated in persona generation through co-creation of characters and scenarios. The results from the workshops were validated together with 8 children without disabilities, 1 young adult with a disability, and 1 rehabilitation professional. A qualitative thematic design analysis was iterated throughout the process. Results: The results consisted of an image-based and iterative co-construction method. It was accompanied by examples of personas that were generated and validated within a games for health case. The method showed effectiveness in enabling flexible co-construction and communication. The data resonated with social model perspectives, and the development is discussed in terms of participation levels, salutogenic descriptions of barriers, and norm-creative tradeoffs. Conclusions: The resulting method may influence future design projects toward more inclusiveness and enable increased representation for children with disabilities in research and design. Using this method to its full potential requires a norm-critical awareness as well as extensive facilitation. Suggestions for further research include the application of the method to design processes in similar contexts or user groups. UR - https://jopm.jmir.org/2022/1/e29743 UR - http://dx.doi.org/10.2196/29743 UR - http://www.ncbi.nlm.nih.gov/pubmed/34989695 ID - info:doi/10.2196/29743 ER - TY - JOUR AU - Smith-Merry, Jennifer AU - O'Donovan, Mary-Ann AU - Dew, Angela AU - Hemsley, Bronwyn AU - Imms, Christine AU - Carey, Gemma AU - Darcy, Simon AU - Ellem, Kathy AU - Gallego, Gisselle AU - Gilroy, John AU - Guastella, Adam AU - Marella, Manjula AU - McVilly, Keith AU - Plumb, Jenny PY - 2022/1/3 TI - The Future of Disability Research in Australia: Protocol for a Multiphase Research Agenda?Setting Study JO - JMIR Res Protoc SP - e31126 VL - 11 IS - 1 KW - disability studies KW - disabled persons KW - disability research KW - consumer-driven community-based research KW - research priorities KW - mixed methods KW - research design N2 - Background: For people with disabilities to live a good life, it is essential that funded research in health and social care addresses their interests, meets their needs, and fills gaps in our understanding of the impact that services, systems, and policies may have on them. Decisions about research funding should be based on an understanding of the research priorities of people with disabilities, their supporters and allies, disability researchers, service providers, and policy makers working in the field. Objective: The aim of this protocol is to describe the research design and methods of a large-scale, disability research agenda?setting exercise conducted in 2021 in Australia. Methods: The research agenda?setting exercise involves 3 integrated phases of work. In the first phase, a previous audit of disability research in Australia is updated to understand previous research and continuing gaps in the research. Building on this, the second phase involves consultation with stakeholders?people with disabilities and their supporters and family members, the disability workforce, and people working within services and connected sectors (eg, aging, employment, education, and housing), academia, and public policy. Data for the second phase will be gathered as follows: a national web-based survey; a consultation process undertaken through the government and nongovernment sector; and targeted consultation with Aboriginal and Torres Strait Islander people, children with disabilities and their families, people with cognitive disability, and people with complex communication needs. The third phase involves a web-based survey to develop a research agenda based on the outcomes of all phases. Results: We have started working on 2 parts of the research prioritization exercise. Through the research-mapping exercise we identified 1241 journal articles and book chapters (referred to as research papers) and 225 publicly available reports (referred to as research reports) produced over the 2018-2020 period. Data collection for the national survey has also been completed. We received 973 fully completed responses to the survey. Analysis of these data is currently underway. Conclusions: This multi-method research agenda?setting study will be the first to provide an indication of the areas of health and social research that people across the Australian disability community consider should be prioritized in disability research funding decisions. Project results from all phases will be made publicly available through reports, open-access journal publications, and Easy Read documents. International Registered Report Identifier (IRRID): DERR1-10.2196/31126 UR - https://www.researchprotocols.org/2022/1/e31126 UR - http://dx.doi.org/10.2196/31126 UR - http://www.ncbi.nlm.nih.gov/pubmed/34706859 ID - info:doi/10.2196/31126 ER - TY - JOUR AU - Lamontagne, Marie-Eve AU - Gagnon, Marie-Pierre AU - Perreault, Kadija AU - Gauthier, Véronique PY - 2021/11/23 TI - Evaluating the Acceptability, Feasibility, and Outcomes of Two Methods Involving Patients With Disability in Developing Clinical Guidelines: Crossover Pilot Study JO - J Particip Med SP - e24319 VL - 13 IS - 3 KW - clinical practice guidelines KW - patient participation KW - traumatic brain injuries KW - clinical practice KW - patient KW - participation KW - brain injury KW - traumatic N2 - Background: Engaging patients and the public in clinical practice guideline (CPG) development is believed to contribute significantly to guideline quality, but the advantages of the various co-design strategies have not been empirically compared, making it difficult to choose one strategy over another. Objective: This pilot study aims to document the acceptability, feasibility, and outcomes of 2 methods of involving patients in outlining CPG. Methods: A single-blind crossover pragmatic study was performed with patients with traumatic brain injury. The patients experimented with 2 alternative methods of producing clinical practice recommendations (ie, a discussion group and a wiki). The participants rated the acceptability of the 2 methods, and feasibility was assessed using indicators, such as the number of participants who completed the 2 methods and the number of support interventions required. Experts, blinded to the method, independently rated the participants' outcome recommendations for clarity, accuracy, appropriateness, and usefulness. Results: We recruited 20 participants, and 16 completed the study. The acceptability of the 2 methods showed little variation, with qualitative comments expressing a slight preference for the social nature of focus groups. Thus, both methods of involving patients in CPG development appeared feasible, and the experts? opinions of the adapted recommendations were both positive, although the recommendations produced through focus groups were deemed more relevant to support clinical practice. Conclusions: Our results confirm the acceptability and feasibility of focus groups and wikis to allow patients with traumatic brain injury to participate in clinical practice guideline production. This study contributes to the scientific literature by suggesting that the 2 methods were acceptable, feasible, and produced positive outcomes. Trial Registration: ClinicalTrials.gov NCT02023138; https://clinicaltrials.gov/ct2/show/NCT02023138 UR - https://jopm.jmir.org/2021/3/e24319/ UR - http://dx.doi.org/10.2196/24319 UR - http://www.ncbi.nlm.nih.gov/pubmed/34812733 ID - info:doi/10.2196/24319 ER - TY - JOUR AU - Wilroy, Jereme AU - Lai, Byron AU - Currie, Madison AU - Young, Hui-Ju AU - Thirumalai, Mohanraj AU - Mehta, Tapan AU - Giannone, John AU - Rimmer, James PY - 2021/11/18 TI - Teleassessments for Enrollment of Adults With Physical or Mobility Disability in a Home-Based Exercise Trial in Response to COVID-19: Usability Study JO - JMIR Form Res SP - e29799 VL - 5 IS - 11 KW - telehealth KW - disability KW - COVID-19 KW - exercise KW - assessments KW - feasibility KW - mHealth KW - teleassessment KW - mobility impairment KW - home exercise KW - participation KW - physical disabilities N2 - Background: The Scale-Up Project Evaluating Responsiveness to Home Exercise And Lifestyle Tele-Health (SUPER-HEALTH) initiative is a large randomized controlled study that aims to overcome logistical barriers to exercise via telehealth for people with physical disabilities. However, at the start of the COVID-19 pandemic, enrollment was halted due to limited operations at the testing site, which included no onsite visits that involved participant data collection. In response to the limited operations, a modified data collection protocol was developed for virtual enrollment of study participants. Objective: This paper presents feasibility data on using teleassessments to enroll people with mobility impairment into a home-based exercise trial. Methods: The modified protocol replaced onsite enrollment and data collection visits with teleassessments using a computer tablet and testing equipment that was shipped to the participants? home address prior to the synchronous teleassessments conducted by an exercise physiologist through Zoom. The participants were mailed a teleassessment toolkit that included a digital blood pressure cuff, spirometer, hand dynamometer, mini disc cone, and measuring tape (to complete standardized testing). The teleassessment measures included resting blood pressure and heart rate, forced vital capacity, grip strength, Five Times Sit to Stand, and Timed Up and Go. Feasibility metrics included technological effectiveness, efficiency, and safety. The technological effectiveness of the telehealth assessment was determined by the percentage of sessions completed without technical issues with ?90% criteria set a priori. Efficiency was measured by a session duration of ?2 hours. Safety was measured by the number of adverse events related to the teleassessments reported. Results: Data from 36 participants were included in this feasibility study, and 34 (94%) participants completed all teleassessments without technical issues. For efficiency, the teleassessment sessions were completed in a mean time of 65 minutes and a maximum session length of 110 minutes. There were no adverse events reported to indicate concerns with the safety of teleassessments. Conclusions: The modified teleassessment protocol, in response to COVID-19 restrictions, may be a feasible process for enrolling adults with mobility impairment into a home exercise trial who otherwise would have not been able to participate. Trial Registration: ClinicalTrials.gov NCT03024320; https://clinicaltrials.gov/ct2/show/NCT03024320 UR - https://formative.jmir.org/2021/11/e29799 UR - http://dx.doi.org/10.2196/29799 UR - http://www.ncbi.nlm.nih.gov/pubmed/34792477 ID - info:doi/10.2196/29799 ER - TY - JOUR AU - Lancioni, E. Giulio AU - Singh, N. Nirbhay AU - O'Reilly, F. Mark AU - Sigafoos, Jeff AU - Alberti, Gloria AU - Chiariello, Valeria AU - Campodonico, Francesca AU - Desideri, Lorenzo PY - 2021/11/17 TI - Technology-Aided Spatial Cues, Instructions, and Preferred Stimulation for Supporting People With Intellectual and Visual Disabilities in Their Occupational Engagement and Mobility: Usability Study JO - JMIR Rehabil Assist Technol SP - e33481 VL - 8 IS - 4 KW - technology KW - smartphone KW - motion sensors KW - intellectual disability KW - visual impairments KW - occupational engagement KW - mobility KW - mobile phone N2 - Background: Persons with severe or profound intellectual disability and visual impairment tend to be passive and sedentary, and technology-aided intervention may be required to improve their condition without excessive demands on staff time. Objective: This study aims to extend the assessment of technology-aided interventions for supporting functional occupational engagement and mobility in 7 people with intellectual disability and visual impairment and to use a technology system that is simpler and less expensive than those previously used. Methods: The technology system involved a Samsung Galaxy A10, 4 Philips Hue indoor motion sensors, and 4 mini speakers. Within each session, the participants were to collect 18 objects (ie, one at a time) from 3 different areas (stations) located within a large room, bring each of the objects to a central desk, and put away each of those objects there. For each object, the participants received verbal (spatial) cues for guiding them to the area where the object was to be collected, a verbal instruction (ie, request) to take an object, verbal (spatial) cues for guiding them to the central desk, a verbal instruction to put away the object collected, and praise and preferred stimulation. Results: During baseline, the frequency of responses completed correctly (objects collected and put away independently) was 0 or near 0. During the intervention phase (ie, with the support of the technology setup), the frequency increased for all participants, reaching a mean of almost 18 (out of 18 response opportunities) for 6 participants and about 13 for the remaining participant. The mean session duration ranged from 12 to 30 minutes. Conclusions: A program, such as the one used in this study, can be useful in promoting occupational engagement and mobility in persons with intellectual disability and visual impairment. UR - https://rehab.jmir.org/2021/4/e33481 UR - http://dx.doi.org/10.2196/33481 UR - http://www.ncbi.nlm.nih.gov/pubmed/34787588 ID - info:doi/10.2196/33481 ER - TY - JOUR AU - El Morr, Christo AU - Maret, Pierre AU - Muhlenbach, Fabrice AU - Dharmalingam, Dhayananth AU - Tadesse, Rediet AU - Creighton, Alexandra AU - Kundi, Bushra AU - Buettgen, Alexis AU - Mgwigwi, Thumeka AU - Dinca-Panaitescu, Serban AU - Dua, Enakshi AU - Gorman, Rachel PY - 2021/11/5 TI - A Virtual Community for Disability Advocacy: Development of a Searchable Artificial Intelligence?Supported Platform JO - JMIR Form Res SP - e33335 VL - 5 IS - 11 KW - virtual community KW - machine learning KW - Semantic Web KW - natural language processing KW - web intelligence KW - health informatics KW - Wikibase KW - disability rights KW - human rights KW - CRPD KW - equity KW - community KW - disability KW - ethics KW - rights KW - pilot KW - platform N2 - Background: The lack of availability of disability data has been identified as a major challenge hindering continuous disability equity monitoring. It is important to develop a platform that enables searching for disability data to expose systemic discrimination and social exclusion, which increase vulnerability to inequitable social conditions. Objective: Our project aims to create an accessible and multilingual pilot disability website that structures and integrates data about people with disabilities and provides data for national and international disability advocacy communities. The platform will be endowed with a document upload function with hybrid (automated and manual) paragraph tagging, while the querying function will involve an intelligent natural language search in the supported languages. Methods: We have designed and implemented a virtual community platform using Wikibase, Semantic Web, machine learning, and web programming tools to enable disability communities to upload and search for disability documents. The platform data model is based on an ontology we have designed following the United Nations Convention on the Rights of Persons with Disabilities (CRPD). The virtual community facilitates the uploading and sharing of validated information, and supports disability rights advocacy by enabling dissemination of knowledge. Results: Using health informatics and artificial intelligence techniques (namely Semantic Web, machine learning, and natural language processing techniques), we were able to develop a pilot virtual community that supports disability rights advocacy by facilitating uploading, sharing, and accessing disability data. The system consists of a website on top of a Wikibase (a Semantic Web?based datastore). The virtual community accepts 4 types of users: information producers, information consumers, validators, and administrators. The virtual community enables the uploading of documents, semiautomatic tagging of their paragraphs with meaningful keywords, and validation of the process before uploading the data to the disability Wikibase. Once uploaded, public users (information consumers) can perform a semantic search using an intelligent and multilingual search engine (QAnswer). Further enhancements of the platform are planned. Conclusions: The platform ontology is flexible and can accommodate advocacy reports and disability policy and legislation from specific jurisdictions, which can be accessed in relation to the CRPD articles. The platform ontology can be expanded to fit international contexts. The virtual community supports information upload and search. Semiautomatic tagging and intelligent multilingual semantic search using natural language are enabled using artificial intelligence techniques, namely Semantic Web, machine learning, and natural language processing. UR - https://formative.jmir.org/2021/11/e33335 UR - http://dx.doi.org/10.2196/33335 UR - http://www.ncbi.nlm.nih.gov/pubmed/34738910 ID - info:doi/10.2196/33335 ER - TY - JOUR AU - Kaelin, C. Vera AU - Valizadeh, Mina AU - Salgado, Zurisadai AU - Parde, Natalie AU - Khetani, A. Mary PY - 2021/11/4 TI - Artificial Intelligence in Rehabilitation Targeting the Participation of Children and Youth With Disabilities: Scoping Review JO - J Med Internet Res SP - e25745 VL - 23 IS - 11 KW - health care KW - pediatric rehabilitation KW - technology KW - young persons KW - robotics KW - human-machine interaction KW - personalization KW - customization KW - goal-setting KW - natural language processing KW - machine learning N2 - Background: In the last decade, there has been a rapid increase in research on the use of artificial intelligence (AI) to improve child and youth participation in daily life activities, which is a key rehabilitation outcome. However, existing reviews place variable focus on participation, are narrow in scope, and are restricted to select diagnoses, hindering interpretability regarding the existing scope of AI applications that target the participation of children and youth in a pediatric rehabilitation setting. Objective: The aim of this scoping review is to examine how AI is integrated into pediatric rehabilitation interventions targeting the participation of children and youth with disabilities or other diagnosed health conditions in valued activities. Methods: We conducted a comprehensive literature search using established Applied Health Sciences and Computer Science databases. Two independent researchers screened and selected the studies based on a systematic procedure. Inclusion criteria were as follows: participation was an explicit study aim or outcome or the targeted focus of the AI application; AI was applied as part of the provided and tested intervention; children or youth with a disability or other diagnosed health conditions were the focus of either the study or AI application or both; and the study was published in English. Data were mapped according to the types of AI, the mode of delivery, the type of personalization, and whether the intervention addressed individual goal-setting. Results: The literature search identified 3029 documents, of which 94 met the inclusion criteria. Most of the included studies used multiple applications of AI with the highest prevalence of robotics (72/94, 77%) and human-machine interaction (51/94, 54%). Regarding mode of delivery, most of the included studies described an intervention delivered in-person (84/94, 89%), and only 11% (10/94) were delivered remotely. Most interventions were tailored to groups of individuals (93/94, 99%). Only 1% (1/94) of interventions was tailored to patients? individually reported participation needs, and only one intervention (1/94, 1%) described individual goal-setting as part of their therapy process or intervention planning. Conclusions: There is an increasing amount of research on interventions using AI to target the participation of children and youth with disabilities or other diagnosed health conditions, supporting the potential of using AI in pediatric rehabilitation. On the basis of our results, 3 major gaps for further research and development were identified: a lack of remotely delivered participation-focused interventions using AI; a lack of individual goal-setting integrated in interventions; and a lack of interventions tailored to individually reported participation needs of children, youth, or families. UR - https://www.jmir.org/2021/11/e25745 UR - http://dx.doi.org/10.2196/25745 UR - http://www.ncbi.nlm.nih.gov/pubmed/34734833 ID - info:doi/10.2196/25745 ER - TY - JOUR AU - McIntyre, Heather AU - Loughhead, Mark AU - Hayes, Laura AU - Procter, Gerard Nicholas PY - 2021/11/4 TI - National Disability Insurance Scheme and Lived Experience of People Presenting to the Emergency Department: Protocol for a Mixed Methods Study JO - JMIR Res Protoc SP - e33268 VL - 10 IS - 11 KW - lived experience KW - National Disability Insurance Scheme KW - emergency department KW - psychosocial disability KW - communication pathways N2 - Background: Currently, within Australia, 3.6% of all emergency department (ED) presentations are mental health?related. Information about the context of the person presenting to the ED (beyond immediate needs), including their psychosocial disability (PSD) National Disability Insurance Scheme (NDIS) plan, is reported as incomplete and fragmented. There are missed opportunities for early support and care continuity that could potentially inform ED practitioners to revise current practices. Objective: The aims of this study are: (1) to obtain original data from the lived experience voice of those with the PSD NDIS plan and their experience when presenting to an ED, (2) to gather information from NDIS service providers to reveal communication pathways between the ED and NDIS services, and (3) to gain knowledge from ED clinicians around processes for improving continuity of care and consumer experience. Methods: This inductive, mixed methods phenomenological study will involve data collection analyzed sequentially, with each stage informing future stages of the research. Interviews will focus on the lived experience voice exploring concerns that have led to an ED presentation, alongside an analysis of associated clinical and administrative documentation and communications. Focus groups with NDIS support workers and support coordinators will provide phenomenological data around the experience from their perspective. National quantitative surveys among those with a PSD NDIS plan and emergency services clinicians will provide insight into current practices within community care and ED presentations. The research project design includes a lived experience advisory group who are assisting with the design of the interview and focus group schedules and national surveys, as well as in shaping the interpretation of qualitative information. All transcripts will be subject to thematic analysis to understand individuals? meaning-making of these complex and particular phenomena. The research team includes a lived experience researcher and a lived experience carer (PhD candidate). Results: This study is funded by MIND Australia as a PhD industry scholarship, which commenced in April 2020. A systematic review as a preresearch activity has been completed and is currently under review. The Human Research Ethics Committee of the University of South Australia has approved this project. An advisory group has been selected, and interview, focus group, and survey schedules are currently being codesigned. Recruitment will commence in November 2021. It is envisaged that data collection will be completed by June 2022. Conclusions: Understanding the lived experience of the precare, during care, and postcare stages of ED presentations from the perspective of those with a PSD NDIS plan will inform the research team around current practices and provide information about improvement for pathways of care for consumers and carers, while also informing health policy. International Registered Report Identifier (IRRID): PRR1-10.2196/33268 UR - https://www.researchprotocols.org/2021/11/e33268 UR - http://dx.doi.org/10.2196/33268 UR - http://www.ncbi.nlm.nih.gov/pubmed/34554101 ID - info:doi/10.2196/33268 ER - TY - JOUR AU - Li, Po-Hung Lieber AU - Han, Ji-Yan AU - Zheng, Wei-Zhong AU - Huang, Ren-Jie AU - Lai, Ying-Hui PY - 2021/10/28 TI - Improved Environment-Aware?Based Noise Reduction System for Cochlear Implant Users Based on a Knowledge Transfer Approach: Development and Usability Study JO - J Med Internet Res SP - e25460 VL - 23 IS - 10 KW - cochlear implants KW - noise reduction KW - deep learning KW - noise classification KW - hearing KW - deaf KW - sound KW - audio KW - cochlear N2 - Background: Cochlear implant technology is a well-known approach to help deaf individuals hear speech again and can improve speech intelligibility in quiet conditions; however, it still has room for improvement in noisy conditions. More recently, it has been proven that deep learning?based noise reduction, such as noise classification and deep denoising autoencoder (NC+DDAE), can benefit the intelligibility performance of patients with cochlear implants compared to classical noise reduction algorithms. Objective: Following the successful implementation of the NC+DDAE model in our previous study, this study aimed to propose an advanced noise reduction system using knowledge transfer technology, called NC+DDAE_T; examine the proposed NC+DDAE_T noise reduction system using objective evaluations and subjective listening tests; and investigate which layer substitution of the knowledge transfer technology in the NC+DDAE_T noise reduction system provides the best outcome. Methods: The knowledge transfer technology was adopted to reduce the number of parameters of the NC+DDAE_T compared with the NC+DDAE. We investigated which layer should be substituted using short-time objective intelligibility and perceptual evaluation of speech quality scores as well as t-distributed stochastic neighbor embedding to visualize the features in each model layer. Moreover, we enrolled 10 cochlear implant users for listening tests to evaluate the benefits of the newly developed NC+DDAE_T. Results: The experimental results showed that substituting the middle layer (ie, the second layer in this study) of the noise-independent DDAE (NI-DDAE) model achieved the best performance gain regarding short-time objective intelligibility and perceptual evaluation of speech quality scores. Therefore, the parameters of layer 3 in the NI-DDAE were chosen to be replaced, thereby establishing the NC+DDAE_T. Both objective and listening test results showed that the proposed NC+DDAE_T noise reduction system achieved similar performances compared with the previous NC+DDAE in several noisy test conditions. However, the proposed NC+DDAE_T only required a quarter of the number of parameters compared to the NC+DDAE. Conclusions: This study demonstrated that knowledge transfer technology can help reduce the number of parameters in an NC+DDAE while keeping similar performance rates. This suggests that the proposed NC+DDAE_T model may reduce the implementation costs of this noise reduction system and provide more benefits for cochlear implant users. UR - https://www.jmir.org/2021/10/e25460 UR - http://dx.doi.org/10.2196/25460 UR - http://www.ncbi.nlm.nih.gov/pubmed/34709193 ID - info:doi/10.2196/25460 ER - TY - JOUR AU - Shikako, Keiko AU - Mogo, I. Ebele R. AU - Grand-Maison, Valerie AU - Simpson, Robert AU - Pritchard-Wiart, Lesley AU - Majnemer, Annette AU - PY - 2021/9/16 TI - Designing User-Centered Mobile Health Initiatives to Promote Healthy Behaviors for Children With Disabilities: Development and Usability Study JO - JMIR Form Res SP - e23877 VL - 5 IS - 9 KW - implementation research KW - mobile health KW - children with disabilities KW - physical activity promotion KW - digital health KW - inclusive leisure participation KW - mobile phone N2 - Background: The gap between research and its practical application in community settings limits its impact on public health. Closing this gap has the potential to improve the well-being of underserved groups, such as children with disabilities. Mobile health has the potential to improve access to community resources and support for underserved populations, thereby encouraging improved health behaviors. Objective: In this feasibility pilot study, we describe the development of the mobile app Jooay. Jooay was developed in partnership with stakeholders to facilitate access to leisure and physical activity community programs for children and youth with disabilities. We also reflect on the lessons learned throughout the implementation process that are relevant for improving the health behaviors of children with disabilities. Methods: We used a participatory action research approach to develop the app. We also administered a survey to current Jooay users and analyzed various app usage indicators to explore use patterns, user feedback, and preferences. Finally, we critically appraised the implementation process through a best practices for implementation research framework. Results: We developed a product that responds to users? identified need to find information and follows accessibility and user-centered design standards. The analysis of usage data revealed that access to the Jooay app is concentrated in urban areas. Perceptions, attitudes, and information needs varied according to the type of user. The use of the mobile app changed over time, and usage decreased after the app was downloaded, indicating a need for the sustained engagement of app users. Users found value in the ability to identify activities that they would not otherwise know about. However, app use alone was not sufficient to improve participation. Although the app was developed based on users? active input in multiple iterations, we encountered challenges with survey recruitment and attrition, suggesting the need for more seamless and engaging means for collecting data within this population. Conclusions: Interactions between users and the app can sustain user engagement and behavior change. We will improve the app?s next iterations by using the information gained from this study to conduct a larger study to assess the relationship among social and material deprivation, urban design, and access to inclusive and adaptive leisure programs. This study will inform the improvement of app listings to improve the use of Jooay by different user groups and promote health through mobile apps for marginalized groups. UR - https://formative.jmir.org/2021/9/e23877 UR - http://dx.doi.org/10.2196/23877 UR - http://www.ncbi.nlm.nih.gov/pubmed/34528886 ID - info:doi/10.2196/23877 ER - TY - JOUR AU - Zengul, Ayse AU - Evans, Eric AU - Hall, Allyson AU - Qu, Haiyan AU - Willig, Amanda AU - Cherrington, Andrea AU - Thirumalai, Mohanraj PY - 2021/9/10 TI - Telehealth Behavioral Intervention for Diabetes Management in Adults With Physical Disabilities: Intervention Fidelity Protocol for a Randomized Controlled Trial JO - JMIR Res Protoc SP - e31695 VL - 10 IS - 9 KW - telehealth KW - health coaching KW - artificial intelligence KW - diabetes mellitus KW - intervention fidelity KW - mobile phone N2 - Background: Diabetes mellitus is a major health problem among people with physical disabilities. Health coaching has been proven to be an effective approach in terms of behavioral changes, patient self-efficacy, adherence to treatment, health service use, and health outcomes. Telehealth systems combined with health coaching have the potential to improve the quality of health care by increasing access to services. Treatment fidelity is particularly important for behavior change studies; however, fidelity protocols are inadequately administered and reported in the literature. Objective: The aim of this study is to outline all the intervention fidelity strategies and procedures of a telecoaching intervention?artificial intelligence for diabetes management (AI4DM)?which is a randomized controlled trial to evaluate the feasibility, acceptability, and preliminary efficacy of a telehealth platform in adults with type 2 diabetes and permanent impaired mobility. AI4DM aims to create a web-based disability-inclusive diabetes self-management program. We selected the National Institutes of Health Behavior Change Consortium (NIH BCC) fidelity framework to describe strategies to ensure intervention fidelity in our research. Methods: We have developed fidelity strategies based on the five fidelity domains outlined by the NIH BCC?focusing on study design, provider training, treatment delivery, treatment receipt, and enactment of treatment skills. The design of the study is grounded in the social cognitive theory and is intended to ensure that both arms would receive the same amount of attention from the intervention. All providers will receive standardized training to deliver consistent health coaching to the participants. The intervention will be delivered through various controlling and monitoring strategies to reduce differences within and between treatment groups. The content and structure of the study are delivered to ensure comprehension and participation among individuals with low health literacy. By constantly reviewing and monitoring participant progress and protocol adherence, we intend to ensure that participants use cognitive and behavioral skills in real-world settings to engage in health behavior. Results: Enrollment for AI4DM will begin in October 2021 and end in October 2022. The results of this study will be reported in late 2022. Conclusions: Developing and using fidelity protocols in behavior change studies is essential to ensure the internal and external validity of interventions. This study incorporates NIH BCC recommendations into an artificial intelligence embedded telecoaching platform for diabetes management designed for people with physical disabilities. The developed fidelity protocol can provide guidance for other researchers conducting telehealth interventions within behavioral health settings to present more consistent and reproducible research. Trial Registration: ClinicalTrials.gov NCT04927377; http://clinicaltrials.gov/ct2/show/NCT04927377. International Registered Report Identifier (IRRID): PRR1-10.2196/31695 UR - https://www.researchprotocols.org/2021/9/e31695 UR - http://dx.doi.org/10.2196/31695 UR - http://www.ncbi.nlm.nih.gov/pubmed/34505835 ID - info:doi/10.2196/31695 ER - TY - JOUR AU - Evans, Eric AU - Zengul, Ayse AU - Hall, Allyson AU - Qu, Haiyan AU - Willig, Amanda AU - Cherrington, Andrea AU - Thirumalai, Mohanraj PY - 2021/9/10 TI - Disability-Inclusive Diabetes Self-management Telehealth Program: Protocol for a Pilot and Feasibility Study JO - JMIR Res Protoc SP - e31689 VL - 10 IS - 9 KW - telehealth KW - health coaching KW - artificial intelligence KW - diabetes mellitus KW - mobile phone N2 - Background: Individuals with disabilities and type 2 diabetes require self-management programs that are accessible, sustainable, inclusive, and adaptable. Health coaching has been shown to be an effective approach for improving behavioral changes in self-management. Health coaching combined with telehealth technology has the potential to improve the overall quality of and access to health services. Objective: This protocol outlines the study design for implementing the Artificial Intelligence for Diabetes Management (AI4DM) intervention. The protocol will assess the feasibility, acceptability, and preliminary efficacy of the AI4DM telehealth platform for people with disabilities. Methods: The AI4DM study is a 2-arm randomized controlled trial for evaluating the delivery of a 12-month intervention, which will involve telecoaching, diabetes educational content, and technology access, to 90 individuals with diabetes and physical disabilities. The hypothesis is that this pilot project is feasible and acceptable for adults with permanently impaired mobility and type 2 diabetes. We also hypothesize that adults in the AI4DM intervention groups will have significantly better glycemic control (glycated hemoglobin) and psychosocial and psychological measures than the attention control group at the 3-, 6-, and 12-month follow-ups. Results: The AI4DM study was approved by the university?s institutional review board, and recruitment and enrollment will begin in October 2021. Conclusions: The AI4DM study will improve our understanding of the feasibility and efficacy of a web-based diabetes self-management program for people with disabilities. The AI4DM intervention has the potential to become a scalable and novel method for successfully managing type 2 diabetes in people with disabilities. Trial Registration: ClinicalTrials.gov NCT04927377; https://clinicaltrials.gov/ct2/show/NCT04927377 International Registered Report Identifier (IRRID): PRR1-10.2196/31689 UR - https://www.researchprotocols.org/2021/9/e31689 UR - http://dx.doi.org/10.2196/31689 UR - http://www.ncbi.nlm.nih.gov/pubmed/34505831 ID - info:doi/10.2196/31689 ER - TY - JOUR AU - Malone, A. Laurie AU - Davlyatov, K. Ganisher AU - Padalabalanarayanan, Sangeetha AU - Thirumalai, Mohanraj PY - 2021/8/26 TI - Active Video Gaming Using an Adapted Gaming Mat in Youth and Adults With Physical Disabilities: Observational Study JO - JMIR Serious Games SP - e30672 VL - 9 IS - 3 KW - exergaming KW - video games KW - disability KW - exercise KW - physical activity KW - enjoyment KW - dance mat KW - serious games KW - gaming mat KW - mobility impairment KW - physical impairment N2 - Background: A common leisure-time activity amongst youth and adults in the United States is video gameplay. Playing video games is typically a sedentary endeavor; however, to encourage an increased level of physical activity in an engaging and enjoyable way, active video gaming has become popular. Unfortunately, the accessibility of gaming controllers is often an issue for persons with disabilities. A commercial off-the-shelf (OTS) gaming mat was adapted to facilitate use by individuals with mobility impairments to address this issue. Objective: Our study aimed to examine energy expenditure, enjoyment, and gameplay experience in youth and adults with mobility impairment during active video gaming using an OTS and adapted versions of a gaming mat. Methods: The study used an observational design. During visit 1, physical function was assessed, and participants were given a familiarization period with the gaming system. For visit 2, based on observation during the physical function tests and discussion with the participant, it was decided whether the participant would play in a standing or seated position. For standing gameplay, the mat was placed on the floor, and for seated play, the mat was placed on a height-adjustable and tilt-adjustable tabletop. Metabolic data were collected during a 20-minute baseline and four 10-minute bouts of Wii Fit Plus gameplay, with 2 bouts on each of the mats (adapted and OTS). During gameplay, the research staff observed and rated participants? ability to use the game controller (mat) and the quality of gameplay. At the end of each game set, participants reported their rating of perceived exertion on a scale from 0 to 10. During rest, participants completed the physical activity enjoyment scale. Participants also answered additional questions regarding the system's usability with each controller (adapted mat and OTS mat). Statistical analyses were computed using Stata 16 (version 16.1; StataCorp). Linear mixed-effects maximum likelihood regression was performed separately for individuals who could play standing and for those who played seated. Results: A convenience sample of 78 individuals with mobility impairments between the ages of 12 and 60 years (mean 39.6, SD 15.8) participated in the study. Of the sample, 48 participants played the video games in a seated position, while 30 played the games standing. Energy expenditure and heart rate tended to be higher in the OTS mat condition for seated players, while values were similar for both conditions among standing players. However, seated participants reported greater gameplay experience, and both groups exhibited a higher quality of gameplay during the adapted mat condition. Conclusions: Active video gaming using an adapted gaming mat provided an enjoyable exercise activity for individuals with mobility impairments. The use of the adapted controller provides a means by which this population can engage in light to moderate intensity active video gaming, thereby reducing sedentary leisure time. Trial Registration: ClinicalTrials.gov NCT02994199; https://clinicaltrials.gov/ct2/show/NCT02994199 UR - https://games.jmir.org/2021/3/e30672 UR - http://dx.doi.org/10.2196/30672 UR - http://www.ncbi.nlm.nih.gov/pubmed/34435962 ID - info:doi/10.2196/30672 ER - TY - JOUR AU - Siedlikowski, Maia AU - Curiale, Lianna AU - Rauch, Frank AU - Tsimicalis, Argerie PY - 2021/8/10 TI - Experiences of Children With Osteogenesis Imperfecta in the Co-design of the Interactive Assessment and Communication Tool Sisom OI: Secondary Analysis of Qualitative Design Sessions JO - JMIR Pediatr Parent SP - e22784 VL - 4 IS - 3 KW - child health KW - symptom assessment KW - communication KW - mobile applications KW - software N2 - Background: Children with osteogenesis imperfecta (OI) experience a diversity of symptoms that expose them to difficult physical, mental, and social challenges. Sisom (DHealth) is an interactive assessment and communication tool designed to help children aged 6-12 years with chronic conditions express their symptoms. Recently, the co-design of the Sisom OI paper prototype was launched by seeking the perspectives of end users, including children with OI and their clinicians. Objective: The aim of this study is to describe the experiences that children with OI were prompted to share with researchers during the co-design of the Sisom OI paper prototype. Methods: A secondary analysis of qualitative data was conducted at a university-affiliated, pediatric, orthopedic hospital. The data sources consisted of interview transcripts, drawings, field notes, and observations derived from interviewing 12 children with OI who participated in the co-design of the Sisom OI paper prototype. The themes and subthemes identified from the data sources were generated using qualitative description. Results: Three themes were identified. The first, Relating to Others, described the balance between feeling different versus feeling similar to other children. The subthemes were Common OI Experience, Feeling Different, and Feeling Just Like Others. The second, Relating to Their Condition, described children?s positive and negative interactions with their own condition and health care. The subthemes were Understanding Their Condition, Special Relationship with the Hospital, and Difficult Treatments and Procedures. The third, Reflecting on Capabilities, described children?s recognition of their strengths and limitations. The subthemes were Perceiving Limitations, Overcoming Isolation, and Celebrating Strengths. Conclusions: This co-design process provided children with OI the space to not only contribute to the development of the end product but also eloquently describe their experiences. These findings, based on the descriptions given by the children themselves, offer us a unique understanding of what it means to grow up with OI. UR - https://pediatrics.jmir.org/2021/3/e22784 UR - http://dx.doi.org/10.2196/22784 UR - http://www.ncbi.nlm.nih.gov/pubmed/34383677 ID - info:doi/10.2196/22784 ER - TY - JOUR AU - Gagnon, Marianne AU - Marino Merlo, Gabriela AU - Yap, Rita AU - Collins, Jessica AU - Elfassy, Caroline AU - Sawatzky, Bonita AU - Marsh, Jacquelyn AU - Hamdy, Reggie AU - Veilleux, Louis-Nicolas AU - Dahan-Oliel, Noémi PY - 2021/7/6 TI - Using Telerehabilitation to Deliver a Home Exercise Program to Youth With Arthrogryposis: Single Cohort Pilot Study JO - J Med Internet Res SP - e27064 VL - 23 IS - 7 KW - telerehabilitation KW - teleassessment KW - arthrogryposis multiplex congenita KW - physical therapy KW - occupational therapy N2 - Background: Arthrogryposis multiplex congenita (AMC) is characterized by joint contractures and muscle weakness, which limit daily activities. Youths with AMC require frequent physical therapeutic follow-ups to limit the recurrence of contractures and maintain range of motion (ROM) and muscle strength; however, access to specialized care may be limited because of geographical distance. Telerehabilitation can offer a potential solution for delivering frequent follow-ups for youth with AMC, but research on the use of telerehabilitation in children with musculoskeletal disorders is scarce. Objective: The study aims to evaluate the feasibility of delivering a home exercise program (HEP) by using telerehabilitation for youth with AMC. We also aim to explore the effectiveness of the HEP as a secondary aim. Methods: Youths aged between 8 and 21 years with AMC were recruited at the Shriners Hospitals for Children?Canada. The participants completed baseline and post-HEP questionnaires (the Physical Activity Questionnaire for Adolescents, Pediatrics Outcomes Data Collection Instrument, and Adolescent and Pediatric Pain Tool), and clinicians assessed their active ROM using a virtual goniometer. Clinicians used the Goal Attainment Scale with the participants to identify individualized goals to develop a 12-week HEP and assess the achievement of these goals. Follow-ups were conducted every 3 weeks to adjust the HEP. Data on withdrawal rates and compliance to the HEP and follow-ups were collected to assess the feasibility of this approach. The interrater reliability of using a virtual goniometer was assessed using the intraclass correlation coefficient and associated 95% CI. Nonparametric tests were used to evaluate feasibility and explore the effectiveness of the HEP. Results: Of the 11 youths who were recruited, 7 (median age: 16.9 years) completed the HEP. Of the 47 appointments scheduled, 5 had to be rescheduled in ?24 hours. The participants performed their HEP 2.04 times per week (95% CI 1.25-4.08) and reported good satisfaction with the approach. A general intraclass correlation coefficient of 0.985 (95% CI 0.980-0.989) was found for the web-based ROM measurement. Individualized goals were related to pain management; endurance in writing, standing, or walking; sports; and daily activities. In total, 12 of the 15 goals set with the participants were achieved. Statistically significant improvements were observed in the pain and comfort domain of the Pediatrics Outcomes Data Collection Instrument (preintervention: median 71; 95% CI 34-100; postintervention: median 85; 95% CI 49-100; P=.08) and Physical Activity Questionnaire for Adolescents (preintervention: median 1.62; 95% CI 1.00-2.82; postintervention: median 2.32; 95% CI 1.00-3.45; P=.046). Conclusions: The remote delivery of an HEP for youth with AMC is feasible. Promising results were found for the effectiveness of the HEP in helping youths with AMC to achieve their goals. The next step will be to assess the effectiveness of this exercise intervention in a randomized controlled trial. International Registered Report Identifier (IRRID): RR2-10.2196/18688 UR - https://www.jmir.org/2021/7/e27064 UR - http://dx.doi.org/10.2196/27064 UR - http://www.ncbi.nlm.nih.gov/pubmed/34255680 ID - info:doi/10.2196/27064 ER - TY - JOUR AU - Caine, A. Joshua AU - Klein, Britt AU - Edwards, L. Stephen PY - 2021/6/17 TI - The Impact of a Novel Mimicry Task for Increasing Emotion Recognition in Adults with Autism Spectrum Disorder and Alexithymia: Protocol for a Randomized Controlled Trial JO - JMIR Res Protoc SP - e24543 VL - 10 IS - 6 KW - alexithymia hypothesis KW - training facial expression emotion recognition KW - mimicry task KW - autism spectrum disorder KW - interoception KW - facial expression KW - emotion KW - emotion recognition KW - autism KW - spectrum disorder KW - mimicry KW - therapy KW - protocol KW - expression KW - disability N2 - Background: Impaired facial emotion expression recognition (FEER) has typically been considered a correlate of autism spectrum disorder (ASD). Now, the alexithymia hypothesis is suggesting that this emotion processing problem is instead related to alexithymia, which frequently co-occurs with ASD. By combining predictive coding theories of ASD and simulation theories of emotion recognition, it is suggested that facial mimicry may improve the training of FEER in ASD and alexithymia. Objective: This study aims to evaluate a novel mimicry task to improve FEER in adults with and without ASD and alexithymia. Additionally, this study will aim to determine the contributions of alexithymia and ASD to FEER ability and assess which of these 2 populations benefit from this training task. Methods: Recruitment will primarily take place through an ASD community group with emphasis put on snowball recruiting. Included will be 64 consenting adults equally divided between participants without an ASD and participants with an ASD. Participants will be screened online using the Kessler Psychological Distress Scale (K-10; cut-off score of 22), Autism Spectrum Quotient (AQ-10), and Toronto Alexithymia Scale (TAS-20) followed by a clinical interview with a provisional psychologist at the Federation University psychology clinic. The clinical interview will include assessment of ability, anxiety, and depression as well as discussion of past ASD diagnosis and confirmatory administration of the Autism Mental Status Exam (AMSE). Following the clinical interview, the participant will complete the Bermond-Vorst Alexithymia Questionnaire (BVAQ) and then undertake a baseline assessment of FEER. Consenting participants will then be assigned using a permuted blocked randomization method into either the control task condition or the mimicry task condition. A brief measure of satisfaction of the task and a debriefing session will conclude the study. Results: The study has Federation University Human Research Ethics Committee approval and is registered with the Australian New Zealand Clinical Trials. Participant recruitment is predicted to begin in the third quarter of 2021. Conclusions: This study will be the first to evaluate the use of a novel facial mimicry task condition to increase FEER in adults with ASD and alexithymia. If efficacious, this task could prove useful as a cost-effective adjunct intervention that could be used at home and thus remove barriers to entry. This study will also explore the unique effectiveness of this task in people without an ASD, with an ASD, and with alexithymia. Trial Registration: Australian New Zealand Clinical Trial Registry ACTRN12619000705189p; https://www.anzctr.org.au/Trial/Registration/TrialReview.aspx?id=377455 International Registered Report Identifier (IRRID): PRR1-10.2196/24543 UR - https://www.researchprotocols.org/2021/6/e24543/ UR - http://dx.doi.org/10.2196/24543 UR - http://www.ncbi.nlm.nih.gov/pubmed/34170257 ID - info:doi/10.2196/24543 ER - TY - JOUR AU - Gibson, Colin Ryan AU - Bouamrane, Matt-Mouley AU - Dunlop, D. Mark PY - 2021/6/9 TI - Alternative and Augmentative Communication Technologies for Supporting Adults With Mild Intellectual Disabilities During Clinical Consultations: Scoping Review JO - JMIR Rehabil Assist Technol SP - e19925 VL - 8 IS - 2 KW - intellectual disabilities KW - health care KW - communication KW - alternative and augmentative communication KW - communication modalities KW - mobile applications KW - patient passports KW - Talking Mats KW - health assessment booklets N2 - Background: People with intellectual disabilities (IDs) face significant communication barriers when accessing health care services; they find it difficult to identify and describe conditions clearly enough to support practitioners in making an accurate diagnosis. In addition, medical professionals generally have little knowledge and understanding of the needs of people with ID, which may result in the use of consultation techniques that do not cater to their patients? skills. Objective: This review aims to identify and synthesize the literature on alternative and augmentative communication technologies that are used to support adults with mild ID during the exchange of information with medical practitioners. Methods: We performed a scoping review of studies published in English that describe the technologies that are used to promote communication with patients with mild ID during medical consultations. The databases searched were PubMed, ACM Digital Library, and Google Scholar. A qualitative framework-based approach was used to synthesize the data and discern key recurring themes across the identified literature. Results: Of the 1557 articles screened, 15 (0.96%) met our inclusion criteria. The bulk of the communication aids used focused on low-tech solutions, including patient passports, note-based prompts, Talking Mats, health diaries, and easy-read information sheets. Their influence on current practice ranged from advancing medical professionals? knowledge of the health and communication needs of people with ID to increasing interagency collaboration, patient advocacy skills, and health promotion activities. The major barriers to the implementation of low-tech aids were a lack of portability and increased maintenance efforts. Only 3 studies explored the use of mobile apps to promote communication. Their findings indicated that high-tech solutions offer greater customization with regard to the accessibility and health care needs of people with ID. Conclusions: Alternative and augmentative communication technologies have the potential to increase the quality of care provided to patients with mild ID; however, little work has been carried out in this area. Greater emphasis must be placed on (high-tech) two-way communication aids that empower patients to become involved in decisions regarding their care. Quantitative evaluation methods should be used to discern the true benefits of such aids, and researchers should describe their study protocols in depth to promote replication and generalizability. UR - https://rehab.jmir.org/2021/2/e19925 UR - http://dx.doi.org/10.2196/19925 UR - http://www.ncbi.nlm.nih.gov/pubmed/34106087 ID - info:doi/10.2196/19925 ER - TY - JOUR AU - Herbuela, Marquez Von Ralph Dane AU - Karita, Tomonori AU - Furukawa, Yoshiya AU - Wada, Yoshinori AU - Yagi, Yoshihiro AU - Senba, Shuichiro AU - Onishi, Eiko AU - Saeki, Tatsuo PY - 2021/6/7 TI - Integrating Behavior of Children with Profound Intellectual, Multiple, or Severe Motor Disabilities With Location and Environment Data Sensors for Independent Communication and Mobility: App Development and Pilot Testing JO - JMIR Rehabil Assist Technol SP - e28020 VL - 8 IS - 2 KW - profound intellectual and multiple disabilities KW - severe motor and intellectual disabilities KW - mobile app development KW - augmentative and alternative communication KW - AAC KW - smartphone-based data collection KW - behavior KW - child KW - sensor KW - communication KW - mobility KW - development KW - pilot KW - app N2 - Background: Children with profound intellectual and multiple disabilities (PIMD) or severe motor and intellectual disabilities (SMID) only communicate through movements, vocalizations, body postures, muscle tensions, or facial expressions on a pre- or protosymbolic level. Yet, to the best of our knowledge, there are few systems developed to specifically aid in categorizing and interpreting behaviors of children with PIMD or SMID to facilitate independent communication and mobility. Further, environmental data such as weather variables were found to have associations with human affects and behaviors among typically developing children; however, studies involving children with neurological functioning impairments that affect communication or those who have physical and/or motor disabilities are unexpectedly scarce. Objective: This paper describes the design and development of the ChildSIDE app, which collects and transmits data associated with children?s behaviors, and linked location and environment information collected from data sources (GPS, iBeacon device, ALPS Sensor, and OpenWeatherMap application programming interface [API]) to the database. The aims of this study were to measure and compare the server/API performance of the app in detecting and transmitting environment data from the data sources to the database, and to categorize the movements associated with each behavior data as the basis for future development and analyses. Methods: This study utilized a cross-sectional observational design by performing multiple single-subject face-to-face and video-recorded sessions among purposively sampled child-caregiver dyads (children diagnosed with PIMD/SMID, or severe or profound intellectual disability and their primary caregivers) from September 2019 to February 2020. To measure the server/API performance of the app in detecting and transmitting data from data sources to the database, frequency distribution and percentages of 31 location and environment data parameters were computed and compared. To categorize which body parts or movements were involved in each behavior, the interrater agreement ? statistic was used. Results: The study comprised 150 sessions involving 20 child-caregiver dyads. The app collected 371 individual behavior data, 327 of which had associated location and environment data from data collection sources. The analyses revealed that ChildSIDE had a server/API performance >93% in detecting and transmitting outdoor location (GPS) and environment data (ALPS sensors, OpenWeatherMap API), whereas the performance with iBeacon data was lower (82.3%). Behaviors were manifested mainly through hand (22.8%) and body movements (27.7%), and vocalizations (21.6%). Conclusions: The ChildSIDE app is an effective tool in collecting the behavior data of children with PIMD/SMID. The app showed high server/API performance in detecting outdoor location and environment data from sensors and an online API to the database with a performance rate above 93%. The results of the analysis and categorization of behaviors suggest a need for a system that uses motion capture and trajectory analyses for developing machine- or deep-learning algorithms to predict the needs of children with PIMD/SMID in the future. UR - https://rehab.jmir.org/2021/2/e28020 UR - http://dx.doi.org/10.2196/28020 UR - http://www.ncbi.nlm.nih.gov/pubmed/34096878 ID - info:doi/10.2196/28020 ER - TY - JOUR AU - Kim, Heon Ho AU - An, Il Jae AU - Park, Rang Yu PY - 2021/6/4 TI - A Prediction Model for Detecting Developmental Disabilities in Preschool-Age Children Through Digital Biomarker-Driven Deep Learning in Serious Games: Development Study JO - JMIR Serious Games SP - e23130 VL - 9 IS - 2 KW - developmental delay KW - diagnosis prediction KW - deep learning KW - serious games KW - digital health KW - digital phenotyping KW - digital biomarkers N2 - Background: Early detection of developmental disabilities in children is essential because early intervention can improve the prognosis of children. Meanwhile, a growing body of evidence has indicated a relationship between developmental disability and motor skill, and thus, motor skill is considered in the early diagnosis of developmental disability. However, there are challenges to assessing motor skill in the diagnosis of developmental disorder, such as a lack of specialists and time constraints, and thus it is commonly conducted through informal questions or surveys to parents. Objective: This study sought to evaluate the possibility of using drag-and-drop data as a digital biomarker and to develop a classification model based on drag-and-drop data with which to classify children with developmental disabilities. Methods: We collected drag-and-drop data from children with typical development and developmental disabilities from May 1, 2018, to May 1, 2020, via a mobile application (DoBrain). We used touch coordinates and extracted kinetic variables from these coordinates. A deep learning algorithm was developed to predict potential development disabilities in children. For interpretability of the model results, we identified which coordinates contributed to the classification results by applying gradient-weighted class activation mapping. Results: Of the 370 children in the study, 223 had typical development, and 147 had developmental disabilities. In all games, the number of changes in the acceleration sign based on the direction of progress both in the x- and y-axes showed significant differences between the 2 groups (P<.001; effect size >0.5). The deep learning convolutional neural network model showed that drag-and-drop data can help diagnose developmental disabilities, with an area under the receiving operating characteristics curve of 0.817. A gradient class activation map, which can interpret the results of a deep learning model, was visualized with the game results for specific children. Conclusions: Through the results of the deep learning model, we confirmed that drag-and-drop data can be a new digital biomarker for the diagnosis of developmental disabilities. UR - https://games.jmir.org/2021/2/e23130 UR - http://dx.doi.org/10.2196/23130 UR - http://www.ncbi.nlm.nih.gov/pubmed/34085944 ID - info:doi/10.2196/23130 ER - TY - JOUR AU - Siddiqui, Ayat AU - Ladak, Akbar Laila AU - Kazi, Momin Abdul AU - Kaleem, Sidra AU - Akbar, Fizza AU - Kirmani, Salman PY - 2021/6/3 TI - Assessing Health-Related Quality of Life, Morbidity, and Survival Status for Individuals With Down Syndrome in Pakistan (DS-Pak): Protocol for a Web-Based Collaborative Registry JO - JMIR Res Protoc SP - e24901 VL - 10 IS - 6 KW - Down syndrome KW - registry KW - web-based registry KW - health-related quality of life KW - lower-middle income country KW - mobile health KW - patient-reported outcome N2 - Background: Down syndrome is the most common chromosomal disorder, with a global incidence of 1 in 700 live births. However, the true prevalence, associated morbidities, and health-related quality of life (HRQOL) of these individuals and their families are not well documented, especially in low- and middle-income countries such as Pakistan. Disease-specific documentation in the form of a collaborative registry is required to better understand this condition and the associated health outcomes. This protocol paper describes the aims and processes for developing the first comprehensive, web-based collaborative registry for Down syndrome in a Pakistani cohort. Objective: This study aims to assess the HRQOL, long-term survival, and morbidity of individuals with Down syndrome by using a web-based collaborative registry. Methods: The registry data collection will be conducted at the Aga Khan University Hospital and at the Karachi Down Syndrome Program. Data will be collected by in-person interviews or virtually via telephone or video interviews. Participants of any age and sex with Down syndrome (trisomy 21) will be recruited. After receiving informed consent and assent, a series of tablet-based questionnaires will be administered. The questionnaires aim to assess the sociodemographic background, clinical status, and HRQOL of the participants and their families. Data will be uploaded to a secure cloud server to allow for real-time access to participant responses by the clinicians to plan prompt interventions. Patient safety and confidentiality will be maintained by using multilayer encryption and unique coded patient identifiers. The collected data will be analyzed using IBM SPSS Statistics for Windows, Version 22.0 (IBM Corporation), with the mean and SD of continuous variables being reported. Categorical variables will be analyzed with their percentages being reported and with a P value cutoff of .05. Multivariate regression analysis will be conducted to identify predictors related to the HRQOL in patients with Down syndrome. Survival analysis will be reported using the Kaplan-Meier survival curves. Results: The web-based questionnaire is currently being finalized before the commencement of pilot testing. This project has not received funding at the moment (ethical review committee approval reference ID: 2020-3582-11145). Conclusions: This registry will allow for a comprehensive understanding of Down syndrome in low- and middle-income countries. This can provide the opportunity for data-informed interventions, which are tailored to the specific needs of this patient population and their families. Although this web-based registry is a proof of concept, it has the potential to be expanded to national, regional, and international levels. International Registered Report Identifier (IRRID): PRR1-10.2196/24901 UR - https://www.researchprotocols.org/2021/6/e24901 UR - http://dx.doi.org/10.2196/24901 UR - http://www.ncbi.nlm.nih.gov/pubmed/34081014 ID - info:doi/10.2196/24901 ER - TY - JOUR AU - Fakolade, Afolasade AU - Cameron, Julie AU - McKenna, Odessa AU - Finlayson, L. Marcia AU - Freedman, S. Mark AU - Latimer-Cheung, E. Amy AU - Pilutti, A. Lara PY - 2021/6/1 TI - Physical Activity Together for People With Multiple Sclerosis and Their Care Partners: Protocol for a Feasibility Randomized Controlled Trial of a Dyadic Intervention JO - JMIR Res Protoc SP - e18410 VL - 10 IS - 6 KW - multiple sclerosis KW - advanced disability KW - care partners KW - physical activity KW - dyadic intervention KW - feasibility randomized controlled trial N2 - Background: Physical activity (PA) is beneficial for all people; however, people affected by multiple sclerosis (MS) find regular PA challenging. These people may include individuals with advanced disabilities and their care partners. Objective: The objective of this study is to determine the feasibility of a dyadic PA intervention for people with advanced MS and their care partners. Methods: This study is a randomized controlled feasibility trial of a 12-week intervention, with 1:1 allocation into an immediate intervention condition or delayed control condition. A target of 20 people with MS?care partner dyads will be included. The outcomes will be indicators of process, resources, management, and scientific feasibility. Participant satisfaction with the intervention components will be evaluated using a satisfaction survey. The subjective experience of participation in the study will be explored using semistructured interviews. Results: The project is funded by the Consortium of Multiple Sclerosis Centers. This protocol was approved by the Ottawa Hospital Research Ethics Board (20190329-01H) and the University of Ottawa Research Ethics Board (H-09-19-4886). The study protocol was registered with ClinicalTrials.gov in February 2020. The findings of this feasibility trial will be disseminated through presentations at community events to engage the MS population in the interpretation of our results and in the next steps. The results will also be published in peer-reviewed journals and presented to the scientific community at national and international MS conferences. Conclusions: The data collected from this feasibility trial will be used to refine the intervention and materials in preparation for a pilot randomized controlled trial. Trial Registration: ClinicalTrials.gov NCT04267185; https://clinicaltrials.gov/ct2/show/NCT04267185. International Registered Report Identifier (IRRID): PRR1-10.2196/18410 UR - https://www.researchprotocols.org/2021/6/e18410 UR - http://dx.doi.org/10.2196/18410 UR - http://www.ncbi.nlm.nih.gov/pubmed/34061040 ID - info:doi/10.2196/18410 ER - TY - JOUR AU - Kanitkar, Anuprita AU - Parmar, Tejraj Sanjay AU - Szturm, J. Tony AU - Restall, Gayle AU - Rempel, Gina AU - Sepehri, Nariman PY - 2021/5/31 TI - Parents' Perspectives on a Computer Game?Assisted Rehabilitation Program for Manual Dexterity in Children With Cerebral Palsy: Qualitative Analysis of Expectations, Child Engagement, and Benefits JO - JMIR Rehabil Assist Technol SP - e24337 VL - 8 IS - 2 KW - cerebral palsy KW - parents' expectations KW - fine motor function KW - object manipulation KW - computer game?based treatment protocol KW - parents KW - motor function KW - computer games, rehabilitation KW - game-based rehabilitation KW - gross movement KW - children N2 - Background: Children with motor impairments affecting the upper extremity benefit from task-specific therapy, such as constraint-induced movement therapy. However, there is a need to improve engagement and compliance with task-specific exercise programs that target manual dexterity for children with cerebral palsy (CP). A computer game?based rehabilitation (GRP) platform was developed that combines fine manipulation and gross movement exercises with engaging game activities appropriate for young children with CP. Objective: The objectives of this qualitative analysis were to compare parents? perspectives and opinions about expectations, challenges, and benefits between 2 interventions. Methods: A mixed methods, randomized controlled trial (RCT) was conducted to examine the feasibility and estimate the effect size of 2 exercise programs for rehabilitation of manual dexterity of children with CP using either GRP or conventional therapy. Parents of 26 of the children who completed the GRP program (n=33) and parents of 15 of the children who completed the conventional therapy program (n=27) participated in the interviews. A general conductive approach was used to analyze the data recorded during the parents? interviews. Results: Five themes captured the range of the parent?s experiences, viewpoints, and ideas: (1) parents? expectations, (2) child?s engagement with therapy, (3) positive effects of the interventions, (4) challenges, and (5) improving the protocol. Conclusions: Parents from both groups recognized that their expectations related to improving children?s object handling and manipulation skills including participation in activities of daily life were addressed during the 16-week therapy program. Parents perceived a change in the children?s level of independence in their daily tasks at home, school, and leisure activities. Trial Registration: ClinicalTrials.gov NCT02728375; https://clinicaltrials.gov/ct2/show/NCT02728375 UR - https://rehab.jmir.org/2021/2/e24337 UR - http://dx.doi.org/10.2196/24337 UR - http://www.ncbi.nlm.nih.gov/pubmed/34057424 ID - info:doi/10.2196/24337 ER - TY - JOUR AU - Guay, Manon AU - Labbé, Mathieu AU - Séguin-Tremblay, Noémie AU - Auger, Claudine AU - Goyer, Geneviève AU - Veloza, Emily AU - Chevalier, Natalie AU - Polgar, Jan AU - Michaud, François PY - 2021/5/11 TI - Adapting a Person?s Home in 3D Using a Mobile App (MapIt): Participatory Design Framework Investigating the App?s Acceptability JO - JMIR Rehabil Assist Technol SP - e24669 VL - 8 IS - 2 KW - occupational therapy KW - mobile phone KW - aging KW - disability KW - telehealth KW - 3D visualization KW - universal design KW - built environment KW - camera KW - remote assessment KW - assistive technology N2 - Background: Home adaptation processes enhancing occupational engagement rely on identifying environmental barriers, generally during time-consuming home visits performed by occupational therapists (OTs). Relevance of a 3D model to the OT?s work has been attested, but a convenient and consumer-available technology to map the home environment in 3D is currently lacking. For instance, such a technology would support the exploration of home adaptations for a person with disability, with or without an OT visit. Objective: The aim of this study was to document the development and acceptability of a 3D mapping eHealth technology, optimizing its contribution to the OT?s work when conducting assessments in which home representations are essential to fit a person?s needs. Methods: A user-centered perspective, embedded in a participatory design framework where users are considered as research partners (not as just study participants), is reported. OTs, engineers, clinicians, researchers, and students, as well as the relatives of older adults contributed by providing ongoing feedback (eg, demonstrations, brainstorming, usability testing, questionnaires, prototyping). System acceptability, as per the Nielsen model, is documented by deductively integrating the data. Results: A total of 24 stakeholders contributed significantly to MapIt technology?s co-design over a span of 4 years. Fueled by the objective to enhance MapIt?s acceptability, 11 iterations lead to a mobile app to scan a room and produce its 3D model in less than 5 minutes. The app is available for smartphones and paired with computer software. Scanning, visualization, and automatic measurements are done on a smartphone equipped with a motion sensor and a camera with depth perception, and the computer software facilitates visualization, while allowing custom measurement of architectural elements directly on the 3D model. Stakeholders? perception was favorable regarding MapIt?s acceptability, testifying to its usefulness (ie, usability and utility). Residual usability issues as well as concerns about accessibility and scan rendering still need to be addressed to foster its integration to a clinical context. Conclusions: MapIt allows to scan a room quickly and simply, providing a 3D model from images taken in real-world settings and to remotely but jointly explore home adaptations to enhance a person?s occupational engagement. UR - https://rehab.jmir.org/2021/2/e24669 UR - http://dx.doi.org/10.2196/24669 UR - http://www.ncbi.nlm.nih.gov/pubmed/33973867 ID - info:doi/10.2196/24669 ER - TY - JOUR AU - Chau, Hing Pui AU - Kwok, Jojo Yan Yan AU - Chan, Maggie Mee Kie AU - Kwan, Daniel Ka Yu AU - Wong, Lun Kam AU - Tang, Ho Ying AU - Chau, Peter Kan Lung AU - Lau, Matthew Sheung Wa AU - Yiu, Yannex Yan Yan AU - Kwong, Fanny Mei Yan AU - Lai, Thomas Wai Ting AU - Leung, Kit Mun PY - 2021/5/4 TI - Feasibility, Acceptability, and Efficacy of Virtual Reality Training for Older Adults and People With Disabilities: Single-Arm Pre-Post Study JO - J Med Internet Res SP - e27640 VL - 23 IS - 5 KW - virtual reality KW - rehabilitation KW - older adults, people with disabilities KW - evaluation N2 - Background: Unlike most virtual reality (VR) training programs that are targeted at homogenous populations, a set of VR games for rehabilitation purposes targeted at a heterogeneous group of users was developed. The VR games covered physical training, cognitive training (classification and reality orientation), community-living skills training, and relaxing scenery experiences. Special considerations for local older adults and people with disabilities were made in terms of hardware choice and software design. Objective: This study aimed to evaluate the feasibility, acceptance, and efficacy of VR training among users with varying abilities. Methods: A single-arm pretest-posttest evaluation study was conducted. The participants of the evaluation study were encouraged to undergo 30-minute VR training three times a week for 6 weeks. The 30-minute session consisted of 10 minutes of upper-limb motion games, 10 minutes of lower-limb motion games, and 10 minutes of cognitive games/community-living skills training/relaxing scenery experiences, as appropriate. On completion of each session, usage statistics were documented via the built-in VR software, whereas feedback on the experience of the VR games and adverse events was collected via self-reports and staff observations. Feasibility was reflected by usage statistics, and acceptance was reflected by positive feedback. In addition, health outcomes, including upper-limb dexterity, functional mobility, cognitive function, and happiness, were assessed at baseline, as well as 6 weeks and 3 months after baseline. The primary outcomes were upper-limb dexterity and acceptance of playing VR games. Results: A total of 135 participants with a mean age of 62.7 years (SD 21.5) were recruited from May 2019 to January 2020, and 124 (91.9%) completed at least one follow-up. Additionally, 76.3% (103/135) of the participants could attend at least 70% of the proposed 18 sessions, and 72.5% (1382/1906) of the sessions had a training time of at least 20 minutes. Linear mixed effect models showed statistically significant effects in terms of upper-limb dexterity (small effect) and cognitive function (moderate effect). Among the 135 participants, 88 provided positive comments. Additionally, 10.4% (14/135) reported mild discomfort, such as dizziness, and none reported severe discomfort. Conclusions: A set of VR training games for rehabilitation could be applied to users with heterogeneous abilities. Our VR games were acceptable to local older adults and those with different disabilities. Benefits in upper-limb dexterity and cognitive function were observed despite partial compliance to the training protocol. Service providers could refer to our experiences when developing VR training systems for their clients. UR - https://www.jmir.org/2021/5/e27640 UR - http://dx.doi.org/10.2196/27640 UR - http://www.ncbi.nlm.nih.gov/pubmed/33944795 ID - info:doi/10.2196/27640 ER - TY - JOUR AU - Vranceanu, Ana-Maria AU - Bakhshaie, Jafar AU - Reichman, Mira AU - Doorley, James AU - Elwy, Rani A. AU - Jacobs, Cale AU - Chen, Neal AU - Esposito, John AU - Laverty, David AU - Matuszewski, E. Paul AU - Fatehi, Amirreza AU - Bowers, C. Lucy AU - Harris, Mitchel AU - Ring, David PY - 2021/4/28 TI - A Live Video Program to Prevent Chronic Pain and Disability in At-Risk Adults With Acute Orthopedic Injuries (Toolkit for Optimal Recovery): Protocol for a Multisite Feasibility Study JO - JMIR Res Protoc SP - e28155 VL - 10 IS - 4 KW - orthopedic KW - musculoskeletal KW - prevention KW - chronic pain KW - disability KW - intervention KW - video KW - telehealth KW - mobile phone N2 - Background: Despite the pivotal role of psychosocial factors in pain and disability after orthopedic injury, there are no evidence-based preventive interventions targeting psychosocial factors in patients with acute orthopedic injuries. We developed the first mind-body intervention focused on optimizing recovery and improving pain and disability in patients with acute orthopedic injuries who exhibit high levels of catastrophic thinking about pain and/or pain anxiety (Toolkit for Optimal Recovery [TOR] after orthopedic injury). In a pilot single-site randomized controlled trial (RCT), the TOR met a priori set benchmarks for feasibility, acceptability, and satisfaction. The next step in developing TOR is to conduct a multisite feasibility RCT to set the stage for a scientifically rigorous hybrid efficacy-effectiveness trial. Objective: The objective of this study is to conduct a rigorous multisite feasibility RCT of TOR to determine whether the intervention and study methodology meet a priori set benchmarks necessary for the successful implementation of a future multisite hybrid efficacy-effectiveness trial. In this paper, we describe the study design, manualized treatments, and specific strategies used to conduct this multisite feasibility RCT investigation. Methods: This study will be conducted at 3 geographically diverse level 1 trauma centers, anonymized as sites A, B, and C. We will conduct a multisite feasibility RCT of TOR versus the minimally enhanced usual care (MEUC) control (60 patients per site; 30 per arm) targeting a priori set feasibility benchmarks. Adult patients with acute orthopedic injuries who endorse high pain catastrophizing or pain anxiety will be recruited approximately 1-2 months after injury or surgery (baseline). Participants randomized to the TOR will receive a 4-session mind-body treatment delivered via a secure live video by trained clinical psychologists. Participants randomized to the MEUC will receive an educational booklet. Primary outcomes include feasibility of recruitment, appropriateness, feasibility of data collection, acceptability of TOR (adherence to sessions), and treatment satisfaction across all sites. We will also collect data on secondary implementation outcomes, as well as pain severity, physical and emotional function, coping skills, and adverse events. Outcomes will be assessed at baseline, posttreatment, and at the 3-month follow-up. Results: Enrollment for the RCT is estimated to begin in June 2021. The target date of completion of the feasibility RCT is April 2024. The institutional review board approval has been obtained (January 2020). Conclusions: This investigation examines the multisite feasibility of TOR administered via live videoconferencing in adult patients with acute orthopedic injuries. If feasible, the next step is a multisite, hybrid efficacy-effectiveness trial of TOR versus MEUC. Preventive psychosocial interventions can provide a new way to improve patient and provider satisfaction and decrease suffering and health care costs among patients with orthopedic injuries who are at risk for chronic pain and disability. International Registered Report Identifier (IRRID): PRR1-10.2196/28155 UR - https://www.researchprotocols.org/2021/4/e28155 UR - http://dx.doi.org/10.2196/28155 UR - http://www.ncbi.nlm.nih.gov/pubmed/33908886 ID - info:doi/10.2196/28155 ER - TY - JOUR AU - Lindsay, Sally AU - Kolne, Kendall AU - Barker, J. Donna AU - Colantonio, Angela AU - Stinson, Jennifer AU - Moll, Sandra AU - Thomson, Nicole PY - 2021/3/15 TI - Exploration of Gender-Sensitive Care in Vocational Rehabilitation Providers Working With Youth With Disabilities: Codevelopment of an Educational Simulation JO - JMIR Form Res SP - e23568 VL - 5 IS - 3 KW - continuing education KW - gender-identity KW - gender-sensitive care KW - rehabilitation N2 - Background: Although research shows that there is a need for gender-specific vocational support to help youth with disabilities find employment, health care providers often report needing more training in this area. Currently, there are no existing educational simulations of gender-sensitive care within vocational rehabilitation for clinicians who provide care to youth with disabilities. Therefore, developing further educational tools that address gender-sensitive care could help them enhance the care they provide while optimizing patient outcomes. Objective: This study aims to codevelop an educational simulation and identify issues relevant to providing gender-sensitive care within the context of vocational rehabilitation for youth with disabilities. Methods: We used a qualitative co-design approach with a purposive sampling strategy that involved focus group discussions and journal reflections to understand and address issues relevant to gender-sensitive care within vocational rehabilitation for those working with youth with disabilities. A total of 10 rehabilitation providers participated in two sessions (5 participants per session) to design the web-based simulation tool. The sessions (2.5 hours each) were audio recorded, transcribed, and analyzed thematically. Results: Two main themes arose from our analysis of codeveloping a simulation focusing on gender-sensitive care. The first theme involved the relevance of gender within clinical practice; responses varied from hesitance to acknowledging but not talking about it to those who incorporated gender into their practice. The second theme focused on creating a comfortable and safe space to enable gender-sensitive care (ie, included patient-centered care, effective communication and rapport building, appropriate language and pronoun use, respecting gender identity, awareness of stereotypes, and responding to therapeutic ruptures). Conclusions: Our web-based gender-sensitive care simulation that addressed vocational rehabilitation among youth with disabilities was cocreated with clinicians. The simulation highlights many issues relevant to clinical practice and has potential as an educational tool for those working with young people with disabilities. UR - https://formative.jmir.org/2021/3/e23568 UR - http://dx.doi.org/10.2196/23568 UR - http://www.ncbi.nlm.nih.gov/pubmed/33720023 ID - info:doi/10.2196/23568 ER - TY - JOUR AU - Hashim, A. N. AU - Abd Razak, A. N. AU - Gholizadeh, H. AU - Abu Osman, A. N. PY - 2021/2/4 TI - Video Game?Based Rehabilitation Approach for Individuals Who Have Undergone Upper Limb Amputation: Case-Control Study JO - JMIR Serious Games SP - e17017 VL - 9 IS - 1 KW - box and block test KW - Intrinsic Motivation Inventory KW - maximum voluntary contraction KW - motor rehabilitation KW - upper limb amputee KW - video games N2 - Background: Brain plasticity is an important factor in prosthesis usage. This plasticity helps with brain adaptation to learn new movement and coordination patterns needed to control a prosthetic hand. It can be achieved through repetitive muscle training that is usually very exhausting and often results in considerable reduction in patient motivation. Previous studies have shown that a playful concept in rehabilitation can increase patient engagement and perseverance. Objective: This study investigated whether the inclusion of video games in the upper limb amputee rehabilitation protocol could have a beneficial impact for muscle preparation, coordination, and patient motivation among individuals who have undergone transradial upper limb amputation. Methods: Ten participants, including five amputee participants and five able-bodied participants, were enrolled in 10 1-hour sessions within a 4-week rehabilitation program. In order to investigate the effects of the rehabilitation protocol used in this study, virtual reality box and block tests and electromyography (EMG) assessments were performed. Maximum voluntary contraction was measured before, immediately after, and 2 days after interacting with four different EMG-controlled video games. Participant motivation was assessed with the Intrinsic Motivation Inventory (IMI) questionnaire and user evaluation survey. Results: Survey analysis showed that muscle strength and coordination increased at the end of training for all the participants. The results of Pearson correlation analysis indicated that there was a significant positive association between the training period and the box and block test score (r8=0.95, P<.001). The maximum voluntary contraction increment was high before training (6.8%) and in the follow-up session (7.1%), but was very small (2.1%) shortly after the training was conducted. The IMI assessment showed high scores for the subscales of interest, perceived competence, choice, and usefulness, but low scores for pressure and tension. Conclusions: This study demonstrated that video games enhance motivation and adherence in an upper limb amputee rehabilitation program. The use of video games could be seen as a complementary approach for physical training in upper limb amputee rehabilitation. UR - https://games.jmir.org/2021/1/e17017 UR - http://dx.doi.org/10.2196/17017 UR - http://www.ncbi.nlm.nih.gov/pubmed/33538698 ID - info:doi/10.2196/17017 ER - TY - JOUR AU - Garske, Alexander Christian AU - Dyson, Matthew AU - Dupan, Sigrid AU - Nazarpour, Kianoush PY - 2021/2/1 TI - Perception of Game-Based Rehabilitation in Upper Limb Prosthetic Training: Survey of Users and Researchers JO - JMIR Serious Games SP - e23710 VL - 9 IS - 1 KW - upper limb KW - rehabilitation KW - arm prosthesis KW - serious games KW - engagement KW - transfer N2 - Background: Serious games have been investigated for their use in multiple forms of rehabilitation for decades. The rising trend to use games for physical fitness in more recent years has also provided more options and garnered more interest for their use in physical rehabilitation and motor learning. In this study, we report the results of an opinion survey of serious games in upper limb prosthetic training. Objective: This study investigates and contrasts the expectations and preferences for game-based prosthetic rehabilitation of people with limb difference and researchers. Methods: Both participant groups answered open and closed questions as well as a questionnaire to assess their user types. The distribution of the user types was compared with a Pearson chi-square test against a sample population. The data were analyzed using the thematic framework method; answers fell within the themes of usability, training, and game design. Researchers shared their views on current challenges and what could be done to tackle these. Results: A total of 14 people with limb difference and 12 researchers participated in this survey. The open questions resulted in an overview of the different views on prosthetic training games between the groups. The user types of people with limb difference and researchers were both significantly different from the sample population, with ?25=12.3 and ?25=26.5, respectively. Conclusions: We found that the respondents not only showed a general willingness and tentative optimism toward the topic but also acknowledged hurdles limiting the adoption of these games by both clinics and users. The results indicate a noteworthy difference between researchers and people with limb difference in their game preferences, which could lead to design choices that do not represent the target audience. Furthermore, focus on long-term in-home experiments is expected to shed more light on the validity of games in upper limb prosthetic rehabilitation. UR - http://games.jmir.org/2021/1/e23710/ UR - http://dx.doi.org/10.2196/23710 UR - http://www.ncbi.nlm.nih.gov/pubmed/33522975 ID - info:doi/10.2196/23710 ER - TY - JOUR AU - Yeong, Lee Jian AU - Thomas, Peter AU - Buller, James AU - Moosajee, Mariya PY - 2021/1/20 TI - A Newly Developed Web-Based Resource on Genetic Eye Disorders for Users With Visual Impairment (Gene.Vision): Usability Study JO - J Med Internet Res SP - e19151 VL - 23 IS - 1 KW - internet access KW - blindness KW - eye disease KW - genetic diseases KW - usability testing KW - qualitative research KW - internet-based intervention KW - consumer health information KW - mobile phone N2 - Background: Despite the introduction of the Web Content Accessibility Guidelines and legislations, many websites remain poorly accessible to users with disability, especially those with visual impairment, as the internet has become a more visually complex environment. With increasing reliance on the internet and almost 2 million people in the United Kingdom being affected by vision loss, it is important that they are not overlooked when developing web-based materials. A significant proportion of those affected have irreversible vision loss due to rare genetic eye disorders, and many of them use the internet as a primary source of information for their conditions. However, access to high-quality web-based health information with an inclusive design remains a challenge for many. We have developed a new web-based resource for genetic eye disorders called Gene.Vision that aims to provide a holistic guide for patients, relatives, and health care professionals. Objective: Through a usability testing session of our website prototype, this study aims to identify key web-based accessibility features for internet users with vision impairment and to explore whether the contents provided in Gene.Vision are relevant and comprehensible. Methods: A face-to-face testing session with 8 participants (5 patients, 2 family members, and 1 member of the public) and 8 facilitators was conducted on a prototype website. Remote testing was performed with another patient due to COVID-19 restrictions. Home page design, navigation, content layout and quality, language, and readability were explored through direct observation and task completion using the think-aloud method. A patient focus group was organized to elicit further feedback. Qualitative data were gathered and analyzed to identify core themes through open and axial coding. Results: All participants had good computer literacy; 6 patients with visual impairment used visual aid software including iOS VoiceOver and Speak Screen, iOS Classic Invert, ZoomText 2020, Job Access With Speech, and Nonvisual Desktop Access. The features identified by the participants that will enhance accessibility and usability for users with visual impairment were a consistent website layout, a structured information hierarchy with a clear description of links, good chromatic and luminance contrast, a simple home page with predictable and easy navigation, adaptability to various assistive software, and readable and relevant content. They reported that dynamic content (such as carousels) and large empty spaces reduced accessibility. Information on research, support available, practical advice, and links to charities were incentives for repeated website visits. Conclusions: We demonstrated the importance of developing a website with a user-based approach. Through end user testing, we identified several key web-based accessibility features for people with visual impairment. Target end users should always be involved early and throughout the design process to ensure their needs are met. Many of these steps can be implemented easily and will aid in search engine optimization. UR - http://www.jmir.org/2021/1/e19151/ UR - http://dx.doi.org/10.2196/19151 UR - http://www.ncbi.nlm.nih.gov/pubmed/33470932 ID - info:doi/10.2196/19151 ER - TY - JOUR AU - White, Judith AU - Knight, Laura AU - da Cruz, Lyndon AU - Stanga, E. Paulo AU - Patrick, Hannah AU - Powell, Helen AU - Berry, Lee AU - Withers, Kathleen AU - Carolan-Rees, Grace AU - Jackson, L. Timothy PY - 2021/1/20 TI - Effects of the Argus II Retinal Prosthesis System on the Quality of Life of Patients With Ultra-Low Vision Due to Retinitis Pigmentosa: Protocol for a Single-Arm, Mixed Methods Study JO - JMIR Res Protoc SP - e17436 VL - 10 IS - 1 KW - patient-reported outcomes KW - quality of life KW - qualitative methods KW - artificial vision KW - visual function KW - functional vision KW - ultra-low vision KW - low vision KW - visual function questionnaire N2 - Background: Retinitis pigmentosa is an incurable, degenerative retinal condition causing progressive sight loss, significantly affecting patients? quality of life. The Argus II Retinal Prosthesis is a surgically implanted medical device that delivers electrical stimulation to the retina. It is intended to produce a form of artificial vision for blind people with severe-to-profound retinitis pigmentosa by stimulating the remaining viable retinal cells to induce visual perception. This study has been initiated by National Health Service England?s Commissioning through Evaluation program and funded through the National Institute of Health Research of the United Kingdom. Objective: The aim of this study was to assess the effect of the Argus II device on patient?s daily activities and quality of life. Methods: This protocol is a prospective, single-arm, open-label, mixed methods study on 10 consecutive participants receiving the Argus II device. The patient representatives played an integral role in the design of this study. Eligibility criteria include ultra-low vision in both eyes as a result of end-stage retinitis pigmentosa and a willingness and capacity to complete the postimplantation rehabilitation program. Participants will be interviewed by independent researchers at baseline and 12 months later by using a semistructured, in-depth approach, alongside validated questionnaires (Impact of Vision Impairment-Very Low Vision, 5-level EuroQoL-5 dimensions scale, EuroQoL-visual analog scale, and Hospital Anxiety and Depression Scale) and a bespoke device-related questionnaire, which includes questions about users? experiences with the procedure, the device, and rehabilitation. The effect of the device on patients? functional vision and activities of daily living will be assessed by vision rehabilitation specialists using a set of tests measured on an ordinal scale (eg, ability to locate objects and avoid obstacles). Clinical outcomes include full-field stimulus light threshold, square localization, direction of motion, grating visual acuity, Landolt-C, procedural success, and adverse events. Qualitative and quantitative outcomes will be linked in a single database to enable individual participant measures to be considered in toto, comparing baseline to the final review. Results: This study was approved by the local ethics committee on April 24, 2019 (London-Camberwell St. Giles Research Ethics Committee, reference 19/LO/0429). It has also been approved by the Health Research Authority and Health and Care Research Wales. At the time of protocol writing, Argus II was available for use in the United Kingdom; however, the manufacturer recently withdrew the Argus II device from sale in the United Kingdom. Therefore, the study is not going ahead at this time. Conclusions: The mixed methods approach provides a rich and in-depth assessment of the effect of the device on participants? quality of life. Despite the work not going ahead, the publication of this publicly funded protocol is important for researchers planning similar work. International Registered Report Identifier (IRRID): PRR1-10.2196/17436 UR - http://www.researchprotocols.org/2021/1/e17436/ UR - http://dx.doi.org/10.2196/17436 UR - http://www.ncbi.nlm.nih.gov/pubmed/33470946 ID - info:doi/10.2196/17436 ER - TY - JOUR AU - Jeong, Seung-Hyun AU - Lee, Rim Tae AU - Kang, Bae Jung AU - Choi, Mun-Taek PY - 2020/11/23 TI - Analysis of Health Insurance Big Data for Early Detection of Disabilities: Algorithm Development and Validation JO - JMIR Med Inform SP - e19679 VL - 8 IS - 11 KW - early detection of disabilities KW - health insurance KW - big data KW - feature selection KW - classification N2 - 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. UR - http://medinform.jmir.org/2020/11/e19679/ UR - http://dx.doi.org/10.2196/19679 UR - http://www.ncbi.nlm.nih.gov/pubmed/33226352 ID - info:doi/10.2196/19679 ER - TY - JOUR AU - Garcia-Rudolph, Alejandro AU - Saurí, Joan AU - Cegarra, Blanca AU - Bernabeu Guitart, Montserrat PY - 2020/11/20 TI - Discovering the Context of People With Disabilities: Semantic Categorization Test and Environmental Factors Mapping of Word Embeddings from Reddit JO - JMIR Med Inform SP - e17903 VL - 8 IS - 11 KW - disability KW - Reddit KW - social media KW - word2vec KW - semantic categorization KW - silhouette KW - activities of daily life KW - aspects of daily life KW - context KW - embeddings N2 - 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. UR - http://medinform.jmir.org/2020/11/e17903/ UR - http://dx.doi.org/10.2196/17903 UR - http://www.ncbi.nlm.nih.gov/pubmed/33216006 ID - info:doi/10.2196/17903 ER - TY - JOUR AU - Li, Laiyou AU - Sun, Ning AU - Yu, Libo AU - Dong, Xiaoxin AU - Zhao, Jing AU - Ying, Yuchen PY - 2020/10/26 TI - The Needs of Older Adults With Disabilities With Regard to Adaptation to Aging and Home Care: Questionnaire Study JO - JMIR Rehabil Assist Technol SP - e16012 VL - 7 IS - 2 KW - community KW - disability KW - older people KW - adaptation to aging KW - influence factor N2 - 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. UR - http://rehab.jmir.org/2020/2/e16012/ UR - http://dx.doi.org/10.2196/16012 UR - http://www.ncbi.nlm.nih.gov/pubmed/33104000 ID - info:doi/10.2196/16012 ER - TY - JOUR AU - Sezgin, Emre AU - Noritz, Garey AU - Hoffman, Jeffrey AU - Huang, Yungui PY - 2020/10/14 TI - A Medical Translation Assistant for Non?English-Speaking Caregivers of Children With Special Health Care Needs: Proposal for a Scalable and Interoperable Mobile App JO - JMIR Res Protoc SP - e21038 VL - 9 IS - 10 KW - medical translation KW - mobile app KW - special health care needs KW - pediatrics KW - caregiver-provider communication N2 - Background: Communication and comprehension of medical information are known barriers in health communication and equity, especially for non?English-speaking caregivers of children with special health care needs. Objective: The objective of this proposal was to develop an interoperable and scalable medical translation app for non?English-speaking caregivers to facilitate the conversation between provider and caregiver/patient. Methods: We employed user-centered and participatory design methods to understand the problems and develop a solution by engaging the stakeholder team (including caregivers, physicians, researchers, clinical informaticists, nurses, developers, nutritionists, pharmacists, and interpreters) and non?English-speaking caregiver participants. Results: Considering the lack of interpreter service accessibility and advancement in translation technology, our team will develop and test an integrated, multimodal (voice-interactive and text-based) patient portal communication and translation app to enable non?English-speaking caregivers to communicate with providers using their preferred languages. For this initial prototype, we will focus on the Spanish language and Spanish-speaking families to test technical feasibility and evaluate usability. Conclusions: Our proposal brings a unique perspective to medical translation and communication between caregiver and provider by (1) enabling voice entry and transcription in health care communications, (2) integrating with patient portals to facilitate caregiver and provider communications, and (3) adopting a translation verification model to improve accuracy of artificial intelligence?facilitated translations. Expected outcomes include improved health communications, literacy, and health equity. In addition, data points will be collected to improve autotranslation services in medical communications. We believe our proposed solution is affordable, interoperable, and scalable for health systems. UR - http://www.researchprotocols.org/2020/10/e21038/ UR - http://dx.doi.org/10.2196/21038 UR - http://www.ncbi.nlm.nih.gov/pubmed/33051177 ID - info:doi/10.2196/21038 ER - TY - JOUR AU - Masina, Fabio AU - Orso, Valeria AU - Pluchino, Patrik AU - Dainese, Giulia AU - Volpato, Stefania AU - Nelini, Cristian AU - Mapelli, Daniela AU - Spagnolli, Anna AU - Gamberini, Luciano PY - 2020/9/25 TI - Investigating the Accessibility of Voice Assistants With Impaired Users: Mixed Methods Study JO - J Med Internet Res SP - e18431 VL - 22 IS - 9 KW - voice assistants KW - accessibility KW - cognitive functions KW - disability KW - ambient assisted living N2 - 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. UR - http://www.jmir.org/2020/9/e18431/ UR - http://dx.doi.org/10.2196/18431 UR - http://www.ncbi.nlm.nih.gov/pubmed/32975525 ID - info:doi/10.2196/18431 ER - TY - JOUR AU - Siedlikowski, Maia AU - Rauch, Frank AU - Tsimicalis, Argerie PY - 2020/9/22 TI - Giving Children With Osteogenesis Imperfecta a Voice: Participatory Approach for the Development of the Interactive Assessment and Communication Tool Sisom OI JO - J Med Internet Res SP - e17947 VL - 22 IS - 9 KW - child health KW - symptom assessment, communication, mobile apps, software N2 - Background: Children with osteogenesis imperfecta (OI) experience acute and chronic symptoms that expose them to physical, mental, and social challenges. Empowering these children by involving them in their care can help them to cope with OI. Sisom is an interactive assessment and communication tool designed to help children aged 6-12 years with chronic illnesses express their symptoms. This tool has not yet been adapted to the unique needs of OI. Objective: The aim of this study was to develop a Sisom OI paper prototype by seeking the perspectives of end users. Methods: A participatory approach was adopted to develop the prototype overseen by an expert panel of 9 clinicians at a university-affiliated pediatric hospital. Purposive sampling was used to recruit 12 children with OI who were aged 6-12 years. The study was carried out over the course of 3 feedback cycles. Data were deductively interpreted using content analysis techniques. Results: Overall, 64% (57/89) of the Sisom symptoms were deemed relevant for inclusion in Sisom OI, with 42% (37/89) directly incorporated and 22% (20/89) incorporated with changes. In total, 114 symptoms were used to create the prototype, of which 57 were newly generated. The relevant symptoms addressed children?s thoughts and feelings about hospitalization and their wishes for participation in their own care. The new symptoms addressed fractures, body image, and social isolation related to difficulties with accessibility and intimidation. Conclusions: Once developed, Sisom OI will offer clinicians an innovative and child-centered approach to capture children?s perspectives on their condition. UR - http://www.jmir.org/2020/9/e17947/ UR - http://dx.doi.org/10.2196/17947 UR - http://www.ncbi.nlm.nih.gov/pubmed/32960176 ID - info:doi/10.2196/17947 ER - TY - JOUR AU - Lai, Byron AU - Davis, Drew AU - Narasaki-Jara, Mai AU - Hopson, Betsy AU - Powell, Danielle AU - Gowey, Marissa AU - Rocque, G. Brandon AU - Rimmer, H. James PY - 2020/9/3 TI - Feasibility of a Commercially Available Virtual Reality System to Achieve Exercise Guidelines in Youth With Spina Bifida: Mixed Methods Case Study JO - JMIR Serious Games SP - e20667 VL - 8 IS - 3 KW - physical activity KW - active video gaming KW - exergaming KW - disability KW - Oculus Quest N2 - Background: Access to physical activity among youth with spina bifida (SB) is much lower than it is for children without disability. Enjoyable home-based exercise programs are greatly needed. Objective: Our objective is to examine the feasibility of a virtual reality (VR) active video gaming system (ie, bundle of consumer-available equipment) to meet US physical activity guidelines in two youth with SB. Methods: Two youth with SB?a 12-year-old female and a 13-year-old male; both full-time wheelchair users?participated in a brief, 4-week exercise program using a popular VR head-mounted display: Oculus Quest (Facebook Technologies). The system included a Polar H10 (Polar Canada) Bluetooth heart rate monitor, a no-cost mobile phone app (VR Health Exercise Tracker [Virtual Reality Institute of Health and Exercise]), and 13 games. The intervention protocol was conducted entirely in the homes of the participants due to the coronavirus disease 2019 (COVID-19) pandemic. The VR system was shipped to participants and they were instructed to do their best to complete 60 minutes of moderate-intensity VR exercise per day. Exercise duration, intensity, and calories expended were objectively monitored and recorded during exercise using the heart rate monitor and a mobile app. Fatigue and depression were measured via self-report questionnaires at pre- and postintervention. Participants underwent a semistructured interview with research staff at postintervention. Results: Across the intervention period, the total average minutes of all exercise performed each week for participants 1 and 2 were 281 (SD 93) and 262 (SD 55) minutes, respectively. The total average minutes of moderate-intensity exercise performed per week for participants 1 and 2 were 184 (SD 103) (184/281, 65.4%) and 215 (SD 90) (215/262, 82.1%) minutes, respectively. One participant had a reduction in their depression score, using the Quality of Life in Neurological Disorders (Neuro-QoL) test, from baseline to postintervention, but no other changes were observed for fatigue and depression scores. Participants reported that the amount of exercise they completed was far higher than what was objectively recorded, due to usability issues with the chest-worn heart rate monitor. Participants noted that they were motivated to exercise due to the enjoyment of the games and VR headset as well as support from a caregiver. Conclusions: This study demonstrated that two youth with SB who used wheelchairs could use a VR system to independently and safely achieve exercise guidelines at home. Study findings identified a promising protocol for promoting exercise in this population and this warrants further examination in future studies with larger samples. UR - http://games.jmir.org/2020/3/e20667/ UR - http://dx.doi.org/10.2196/20667 UR - http://www.ncbi.nlm.nih.gov/pubmed/32880577 ID - info:doi/10.2196/20667 ER - TY - JOUR AU - Allin, Sonya AU - Shepherd, John AU - Thorson, Teri AU - Tomasone, Jennifer AU - Munce, Sarah AU - Linassi, Gary AU - McBride, B. Christopher AU - Jiancaro, Tizneem AU - Jaglal, Susan PY - 2020/7/31 TI - Web-Based Health Coaching for Spinal Cord Injury: Results From a Mixed Methods Feasibility Evaluation JO - JMIR Rehabil Assist Technol SP - e16351 VL - 7 IS - 2 KW - community-based participatory research KW - spinal cord injury KW - self-management KW - motivational interviewing KW - internet-based intervention N2 - 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. UR - http://rehab.jmir.org/2020/2/e16351/ UR - http://dx.doi.org/10.2196/16351 UR - http://www.ncbi.nlm.nih.gov/pubmed/32589148 ID - info:doi/10.2196/16351 ER - TY - JOUR AU - DeForte, Shelly AU - Sezgin, Emre AU - Huefner, Janelle AU - Lucius, Shana AU - Luna, John AU - Satyapriya, A. Anand AU - Malhotra, Prashant PY - 2020/5/28 TI - Usability of a Mobile App for Improving Literacy in Children With Hearing Impairment: Focus Group Study JO - JMIR Hum Factors SP - e16310 VL - 7 IS - 2 KW - hearing aids KW - focus groups KW - cochlear implants KW - literacy KW - reading KW - hearing loss KW - hearing impairment KW - mobile applications KW - qualitative study KW - usability KW - aural rehabilitation N2 - Background: Children with hearing loss, even those identified early and who use hearing aids or cochlear implants, may face challenges in developing spoken language and literacy. This can lead to academic, behavioral, and social difficulties. There are apps for healthy children to improve their spoken language and literacy and apps that focus on sign language proficiency for children with hearing loss, but these apps are limited for children with hearing loss. Therefore, we have developed an app called Hear Me Read, which uses enhanced digital stories as therapy tools for speech, language, and literacy for children with hearing loss. The platform has therapist and parent/child modes that allow (1) the selection of high-quality, illustrated digital stories by a speech-language pathologist, parent, or child; (2) the modification of digital stories for a multitude of speech and language targets; and (3) the assignment of stories by a therapist to facilitate individualized speech and language goals. In addition, Hear Me Read makes the caregiver a core partner in engagement through functionality, whereby the caregiver can record video and audio of themselves to be played back by the child. Objective: This study aimed to evaluate the user experience of the Hear Me Read app through a focus group study with caregivers and their children. Methods: We recruited 16 participants (8 children with and without hearing loss and 8 caregivers) to participate in 1-hour focus groups. Caregivers and children interacted with the app and discussed their experiences through a semistructured group interview. We employed thematic analysis methods and analyzed the data. We used feedback from the focus group to improve the elements of the app for a larger clinical trial assessing the impact of the app on outcomes. Results: We identified three themes: default needs, specific needs, and family needs. Participants found the app to be esthetically pleasing and easy to use. The findings of this study helped us to identify usability attributes and to amend app functionalities to best fit user needs. Caregivers and children appreciated the enhancements, such as highlighting of parts of speech and caregiver reading of video playback, which were made possible by the digital format. Participants expressed that the app could be used to enhance family reading sessions and family interaction. Conclusions: The findings from this focus group study are promising for the use of educational apps designed specifically for those with hearing loss who are pursuing listening and spoken language as a communication outcome. Further investigation is needed with larger sample sizes to understand the clinical impact on relevant language and literacy outcomes in this population. UR - http://humanfactors.jmir.org/2020/2/e16310/ UR - http://dx.doi.org/10.2196/16310 UR - http://www.ncbi.nlm.nih.gov/pubmed/32205305 ID - info:doi/10.2196/16310 ER - TY - JOUR AU - Stuttard, Lucy AU - Hewitt, Catherine AU - Fairhurst, Caroline AU - Weatherly, Helen AU - Walker, Simon AU - Longo, Francesco AU - Maddison, Jane AU - Boyle, Philip AU - Beresford, Bryony PY - 2020/4/17 TI - 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 JO - JMIR Res Protoc SP - e15452 VL - 9 IS - 4 KW - randomized controlled trial KW - hearing loss KW - qualitative research KW - economics KW - assistance dog N2 - 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 UR - https://www.researchprotocols.org/2020/4/e15452 UR - http://dx.doi.org/10.2196/15452 UR - http://www.ncbi.nlm.nih.gov/pubmed/32301737 ID - info:doi/10.2196/15452 ER - TY - JOUR AU - Berglind, Daniel AU - Yacaman-Mendez, Diego AU - Lavebratt, Catharina AU - Forsell, Yvonne PY - 2020/2/4 TI - 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 JO - JMIR Mhealth Uhealth SP - e14615 VL - 8 IS - 2 KW - mobility disability KW - physical activity KW - cardiorespiratory fitness KW - exercise KW - randomized controlled trial KW - app KW - smartphone N2 - 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. UR - https://mhealth.jmir.org/2020/2/e14615 UR - http://dx.doi.org/10.2196/14615 UR - http://www.ncbi.nlm.nih.gov/pubmed/32014846 ID - info:doi/10.2196/14615 ER - TY - JOUR AU - Su, Jiunn-Yih AU - He, Yaofeng Vincent AU - Guthridge, Steven AU - Silburn, Sven PY - 2020/1/15 TI - The Impact of Hearing Impairment on the Life Trajectories of Aboriginal Children in Remote Australia: Protocol for the Hearing Loss in Kids Project JO - JMIR Res Protoc SP - e15464 VL - 9 IS - 1 KW - data linkage KW - hearing impairment KW - indigenous population KW - child development KW - primary schools KW - academic achievement KW - child maltreatment KW - juvenile delinquency N2 - Background: Previous studies have reported a high prevalence of chronic otitis media (OM) and hearing impairment (HI) in Aboriginal children in the Northern Territory (NT) of Australia. Children affected by these disorders are believed to be at increased risk for adverse outcomes in early childhood development, school attendance, academic performance, and child maltreatment and youth offending. However, to date, there have been no studies quantifying the association between HI and these outcomes in this population. Objective: This study will investigate the association between HI and the 5 outcomes in Aboriginal children living in remote NT communities. Methods: Individual-level information linked across multiple administrative datasets will be used to conduct a series of retrospective observational studies on selected developmental and school outcomes. The predictor variables for all studies are the results from audiometric hearing assessments. The outcome measures are as follows: Australian Early Development Census results, representing developmental readiness for school, assessed around 5 years of age; Year 1 school attendance rates; Year 3 school-based academic performance, assessed in the National Assessment Program?Literacy and Numeracy; incidence of child maltreatment events (including both notifications and substantiated cases); and incidence of a first guilty verdict for youth offenders. Confounding and moderating factors available for the analysis include both community-level factors (including school fixed effects, socioeconomic status, level of remoteness, and housing crowdedness) and individual-level factors (including maternal and perinatal health and hospital admissions in early childhood). Results: The study commenced in 2018, with ethics and data custodian approvals for data access and linkage. This has enabled the completion of data linkage and the commencement of data analysis for individual component studies, with findings expected to be published in 2019 and 2020. Conclusions: This study will provide first evidence of the impact of OM-related HI on the developmental, educational, and social outcomes of Australian Aboriginal children. The findings are expected to have significant implications for policy development, service design, and resource allocation. International Registered Report Identifier (IRRID): RR1-10.2196/15464 UR - https://www.researchprotocols.org/2020/1/e15464 UR - http://dx.doi.org/10.2196/15464 UR - http://www.ncbi.nlm.nih.gov/pubmed/31939348 ID - info:doi/10.2196/15464 ER - TY - JOUR AU - Zhou, Leming AU - Saptono, Andi AU - Setiawan, Agus I. Made AU - Parmanto, Bambang PY - 2020/1/3 TI - Making Self-Management Mobile Health Apps Accessible to People With Disabilities: Qualitative Single-Subject Study JO - JMIR Mhealth Uhealth SP - e15060 VL - 8 IS - 1 KW - mobile app KW - self-management KW - accessibility KW - personalization N2 - 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. UR - https://mhealth.jmir.org/2020/1/e15060 UR - http://dx.doi.org/10.2196/15060 UR - http://www.ncbi.nlm.nih.gov/pubmed/31899453 ID - info:doi/10.2196/15060 ER - TY - JOUR AU - Castro, R. Aimee AU - Chougui, Khadidja AU - Bilodeau, Claudette AU - Tsimicalis, Argerie PY - 2019/12/18 TI - Exploring the Views of Osteogenesis Imperfecta Caregivers on Internet-Based Technologies: Qualitative Descriptive Study JO - J Med Internet Res SP - e15924 VL - 21 IS - 12 KW - smartphone KW - caregivers KW - pediatrics KW - rare diseases KW - telemedicine KW - quality improvement KW - social media KW - chronic disease KW - osteogenesis imperfecta N2 - Background: Osteogenesis imperfecta (OI) is a rare genetic condition that can lead to frequent debilitating bone fractures. Family caregivers of children with OI face unique challenges in providing care, which may include limited access to information about the condition, feelings of distress, and experiences of social isolation. Internet-based technologies (IBTs) have been useful for supporting other types of caregivers. However, the views of OI caregivers on IBTs have not been explored. Objective: This study aimed to explore the views of OI caregivers on the uses of IBTs to support them in caring for their children with OI. Methods: A qualitative descriptive study was conducted. Caregivers of children with OI were recruited at a pediatric hospital in Montreal, Canada. Interviews were used to explore each caregiver?s views on the applicability of IBTs in supporting their caregiving needs. The interviews were transcribed verbatim and thematically analyzed. Results: A total of 18 caregivers participated. The caregivers shared that IBTs were useful for facilitating the following activities: daily activities of caregiving (such as providing physical care, supporting relationships, supporting self-care and hope, and managing the logistics of caregiving), OI medical information seeking, and OI social networking. However, they also revealed concerns about the health consequences of IBT use and the quality of IBT content. Concerns regarding IBTs varied somewhat with caregivers? geographies. Caregivers offered suggestions and strategies for how IBTs can be optimized for caregiving. Conclusions: Family caregivers of children with OI face unique challenges in providing care, which may include lacking access to information about the rare condition and feeling socially isolated. OI caregivers use IBTs to overcome some of these challenges and to support their specific caregiving needs. These findings contribute to the paucity of knowledge by offering varied IBT strategies to support caregiving activities, which may be beneficial for other caregivers. Participants? suggestions for IBT services can inform the development of new resources for OI caregivers and potentially for other caregivers of children living with rare conditions. UR - http://www.jmir.org/2019/12/e15924/ UR - http://dx.doi.org/10.2196/15924 UR - http://www.ncbi.nlm.nih.gov/pubmed/31850851 ID - info:doi/10.2196/15924 ER - TY - JOUR AU - Sinclair, Marlene AU - McCullough, EM Julie AU - Elliott, David AU - Latos-Bielenska, Anna AU - Braz, Paula AU - Cavero-Carbonell, Clara AU - Jamry-Dziurla, Anna AU - João Santos, Ana AU - Páramo-Rodríguez, Lucía PY - 2019/11/25 TI - Exploring Research Priorities of Parents Who Have Children With Down Syndrome, Cleft Lip With or Without Cleft Palate, Congenital Heart Defects, or Spina Bifida Using ConnectEpeople: A Social Media Coproduction Research Study JO - J Med Internet Res SP - e15847 VL - 21 IS - 11 KW - e-forum KW - social media KW - Web-based survey KW - Facebook KW - STAI KW - Down syndrome KW - cleft lip with or without cleft palate KW - congenital heart defects KW - spina bifida KW - parents KW - ocularcentrism KW - coproduction N2 - Background: Using social media for research purposes is novel and challenging in terms of recruitment, participant knowledge about the research process, and ethical issues. This paper provides insight into the recruitment of European parents of children with specific congenital anomalies to engage in coproduction research by using social media. Secret Facebook groups, providing optimal security, were set up for newly recruited research-aware parents (RAPs) to communicate privately and confidentially with each other and for the research team to generate questions and to interpret findings. Objective: This study aimed to use social media for the recruitment and engagement of parents in research and to determine the research priorities of parents who have children with Down syndrome, cleft lip with or without cleft palate, congenital heart defects, and spina bifida. Methods: The design was exploratory and descriptive with 3 phases. Phase 1 included the recruitment of RAPs and generation of research questions important to them; phase 2 was a Web-based survey, designed using Qualtrics software, and phase 3 included analysis and ranking of the top 10 research questions using an adapted James Lind Alliance approach. Simple descriptive statistics were used for analysis, and ethical approval was obtained from the Ethics Filter Committee of the Institute of Nursing and Health Research, Ulster University. Results: The recruitment of 32 RAPs was a sensitive process, varying in the time taken to consent (mean 51 days). However, parents valued the screening approach using the State-Trait Anxiety Inventory as a measure to ensure their well-being (mean 32.5). In phase 1, RAPs generated 98 research questions. In phase 2, 251 respondents accessed the Web-based survey, 248 consented, and 80 completed the survey, giving a completeness rate of 32.3% (80/248). Most parents used social media (74/80, 92%). Social media, online forums, and meeting in person were ranked the most preferable methods for communication with support groups networks and charities. Most respondents stated that they had a good understanding of research reports (71/80, 89%) and statistics (68/80, 85%) and could differentiate among the different types of research methodologies (62/80, 78%). Phase 3 demonstrated consensus among RAPs and survey respondents, with a need to know the facts about their child?s condition, future health, and psychosocial and educational outcomes for children with similar issues. Conclusions: Social media is a valuable facilitator in the coproduction of research between parents and researchers. From a theoretical perspective, ocularcentrism can be an applicable frame of reference for understanding how people favor visual contact. UR - http://www.jmir.org/2019/11/e15847/ UR - http://dx.doi.org/10.2196/15847 UR - http://www.ncbi.nlm.nih.gov/pubmed/31763986 ID - info:doi/10.2196/15847 ER - TY - JOUR AU - Williamson, Heidi AU - Hamlet, Claire AU - White, Paul AU - Marques, R. Elsa M. AU - Paling, Thomas AU - Cadogan, Julia AU - Perera, Rohan AU - Rumsey, Nichola AU - Hayward, Leighton AU - Harcourt, Diana PY - 2019/11/22 TI - A Web-Based Self-Help Psychosocial Intervention for Adolescents Distressed by Appearance-Affecting Conditions and Injuries (Young Persons? Face IT): Feasibility Study for a Parallel Randomized Controlled Trial JO - JMIR Ment Health SP - e14776 VL - 6 IS - 11 KW - physical appearance, body image, disfigurement KW - visible difference KW - adolescents KW - young people KW - psychological support KW - online intervention. N2 - Background: Disfigurement (visible difference) from wide-ranging congenital or acquired conditions, injuries, or treatments can negatively impact adolescents? psychological well-being, education and health behaviours. Alongside medical interventions, appearance-specific cognitive behavioural and social skills training to manage stigma and appearance anxiety may improve psychosocial outcomes. YP Face IT (YPF), is a Web-based seven session self-help program plus booster quiz, utilising cognitive behavioural and social skills training for young people (YP) struggling with a visible difference. Co-designed by adolescents and psychologists, it includes interactive multimedia and automated reminders to complete sessions/homework. Adolescents access YPF via a health professional who determines its suitability and remotely monitors clients? usage. Objective: To establish the feasibility of evaluating YPF for 12-17 year olds self-reporting appearance-related distress and/or bullying associated with a visible difference. Methods: Randomized controlled trial with nested qualitative and economic study evaluating YPF compared with usual care (UC). Feasibility outcomes included: viability of recruiting via general practitioner (GP) practices (face to face and via patient databases) and charity advertisements; intervention acceptability and adherence; feasibility of study and data collection methods; and health professionals? ability to monitor users? online data for safeguarding issues. Primary psychosocial self-reported outcomes collected online at baseline, 13, 26, and 52 weeks were as follows: appearance satisfaction (Appearance Subscale from Mendleson et al?s (2001) Body Esteem Scale); social anxiety (La Greca?s (1999) Social Anxiety Scale for Adolescents). Secondary outcomes were; self-esteem; romantic concerns; perceived stigmatization; social skills and healthcare usage. Participants were randomised using remote Web-based allocation. Results: Thirteen charities advertised the study yielding 11 recruits, 13 primary care practices sent 687 invitations to patients on their databases with a known visible difference yielding 17 recruits (2.5% response rate), 4 recruits came from GP consultations. Recruitment was challenging, therefore four additional practices mass-mailed 3,306 generic invitations to all 12-17 year old patients yielding a further 15 participants (0.5% response rate). Forty-seven YP with a range of socioeconomic backgrounds and conditions were randomised (26% male, 91% white, mean age 14 years (SD 1.7)); 23 to YPF, 24 to UC). At 52 weeks, 16 (70%) in the intervention and 20 (83%) in UC groups completed assessments. There were no intervention-related adverse events; most found YPF acceptable with three withdrawing because they judged it was for higher-level concerns; 12 (52%) completed seven sessions. The study design was acceptable and feasible, with multiple recruitment strategies. Preliminary findings indicate no changes from baseline in outcome measures among the UC group and positive changes in appearance satisfaction and fear of negative evaluation among the YPF group when factoring in baseline scores and intervention adherence. Conclusions: YPF is novel, safe and potentially helpful. Its full psychosocial benefits should be evaluated in a large-scale RCT, which would be feasible with wide-ranging recruitment strategies. Trial Registration: ISRCTN registry ISRCTN40650639; http://www.isrctn.com/ISRCTN40650639 UR - http://mental.jmir.org/2019/11/e14776/ UR - http://dx.doi.org/10.2196/14776 UR - http://www.ncbi.nlm.nih.gov/pubmed/31755870 ID - info:doi/10.2196/14776 ER - TY - JOUR AU - Buimer, Hendrik AU - Schellens, Renske AU - Kostelijk, Tjerk AU - Nemri, Abdellatif AU - Zhao, Yan AU - Van der Geest, Thea AU - Van Wezel, Richard PY - 2019/11/21 TI - Opportunities and Pitfalls in Applying Emotion Recognition Software for Persons With a Visual Impairment: Simulated Real Life Conversations JO - JMIR Mhealth Uhealth SP - e13722 VL - 7 IS - 11 KW - visual impairment KW - emotion recognition KW - tactile KW - social interaction N2 - 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. UR - https://mhealth.jmir.org/2019/11/e13722 UR - http://dx.doi.org/10.2196/13722 UR - http://www.ncbi.nlm.nih.gov/pubmed/31750838 ID - info:doi/10.2196/13722 ER - TY - JOUR AU - Masterson, Yamini AU - Brady, Erin AU - Miller, Andrew PY - 2019/11/12 TI - Informational Practices of Postacute Brain Injury Patients During Personal Recovery: Qualitative Study JO - J Participat Med SP - e15174 VL - 11 IS - 4 KW - chronic illness KW - brain injury KW - disease management KW - mental health recovery KW - quality of life KW - data collection KW - personal health records KW - patient generated health data N2 - Background: The effects of brain injury, structural damage, or the physiological disruption of brain function last far beyond initial clinical treatment. Self-tracking and management technologies have the potential to help individuals experiencing brain injury in their personal recovery?helping them to function at their best despite ongoing symptoms of illness. However, current self-tracking technologies may be unsuited for measuring the interconnected, nonlinear ways in which brain injury manifests. Objective: This study aimed to investigate (1) the current informational practices and sensemaking processes used by postacute brain injury patients during personal recovery and (2) the potential role of quality-of-life instruments in improving patient awareness of brain injury recovery, advocacy, and involvement in care used outside the clinical context. Our objective was to explore the means of improving awareness through reflection that leads to compensatory strategies by anticipating or recognizing the occurrence of a problem caused by impairment. Methods: We conducted a qualitative study and used essentialist or realist thematic analysis to analyze the data collected through semistructured interviews and questionnaires, 2 weeks of structured data collection using brain injury?specific health-related quality of life instrument, quality of life after brain injury (QoLIBRI), and final interviews. Results: Informational practices of people with brain injury involve data collection, data synthesis, and obtaining and applying the insights to their lifestyles. Participants collected data through structured tools such as spreadsheets and wearable devices but switched to unstructured tools such as journals and blogs as changes in overall progress became more qualitative in nature. Although data collection helped participants summarize their progress better, the lack of conceptual understanding made it challenging to know what to monitor or communicate with clinicians. QoLIBRI served as an education tool in this scenario but was inadequate in facilitating reflection and sensemaking. Conclusions: Individuals with postacute brain injury found the lack of conceptual understanding of recovery and tools for making sense of their health data as major impediments for tracking and being aware of their personal recovery. There is an urgent need for a better framework for recovery and a process model for choosing patient-generated health data tools that focus on the holistic nature of recovery and improve the understanding of brain injury for all stakeholders involved throughout recovery. UR - https://jopm.jmir.org/2019/4/e15174 UR - http://dx.doi.org/10.2196/15174 UR - http://www.ncbi.nlm.nih.gov/pubmed/ ID - info:doi/10.2196/15174 ER - TY - JOUR AU - Mowforth, Daniel Oliver AU - Davies, Marshall Benjamin AU - Kotter, Reinhard Mark PY - 2019/11/7 TI - Quality of Life Among Informal Caregivers of Patients With Degenerative Cervical Myelopathy: Cross-Sectional Questionnaire Study JO - Interact J Med Res SP - e12381 VL - 8 IS - 4 KW - spinal cord diseases KW - spondylosis KW - spinal osteophytosis KW - surveys and questionnaires KW - quality of life KW - chronic disease N2 - 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. UR - http://www.i-jmr.org/2019/4/e12381/ UR - http://dx.doi.org/10.2196/12381 UR - http://www.ncbi.nlm.nih.gov/pubmed/31697240 ID - info:doi/10.2196/12381 ER - TY - JOUR AU - Campeau-Vallerand, Charles AU - Michaud, François AU - Routhier, François AU - Archambault, S. Philippe AU - Létourneau, Dominic AU - Gélinas-Bronsard, Dominique AU - Auger, Claudine PY - 2019/10/26 TI - Development of a Web-Based Monitoring System for Power Tilt-in-Space Wheelchairs: Formative Evaluation JO - JMIR Rehabil Assist Technol SP - e13560 VL - 6 IS - 2 KW - wheelchairs KW - eHealth KW - health behavior KW - pressure ulcers KW - self-help devices KW - remote sensing technology KW - technology assessment N2 - 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. UR - https://rehab.jmir.org/2019/2/e13560 UR - http://dx.doi.org/10.2196/13560 UR - http://www.ncbi.nlm.nih.gov/pubmed/31674918 ID - info:doi/10.2196/13560 ER - TY - JOUR AU - Zhou, Leming AU - Parmanto, Bambang PY - 2019/10/25 TI - Reaching People With Disabilities in Underserved Areas Through Digital Interventions: Systematic Review JO - J Med Internet Res SP - e12981 VL - 21 IS - 10 KW - systematic review KW - digital intervention KW - electronic intervention KW - e-intervention KW - underserved area KW - disability KW - telemedicine KW - telerehabilitation KW - eHealth KW - digital health N2 - 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. UR - http://www.jmir.org/2019/10/e12981/ UR - http://dx.doi.org/10.2196/12981 UR - http://www.ncbi.nlm.nih.gov/pubmed/31654569 ID - info:doi/10.2196/12981 ER - TY - JOUR AU - Olsen, H. Sara AU - Saperstein, L. Sandra AU - Gold, S. Robert PY - 2019/10/11 TI - Content and Feature Preferences for a Physical Activity App for Adults With Physical Disabilities: Focus Group Study JO - JMIR Mhealth Uhealth SP - e15019 VL - 7 IS - 10 KW - adapted sport KW - disability KW - physical activity KW - focus group KW - apps KW - fitness KW - user-centered design KW - mHealth N2 - 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. UR - https://mhealth.jmir.org/2019/10/e15019 UR - http://dx.doi.org/10.2196/15019 UR - http://www.ncbi.nlm.nih.gov/pubmed/31605518 ID - info:doi/10.2196/15019 ER - TY - JOUR AU - Alriksson-Schmidt, Ann AU - Jarl, Johan AU - Rodby-Bousquet, Elisabet AU - Lundkvist Josenby, Annika AU - Westbom, Lena AU - Himmelmann, Kate AU - Stadskleiv, Kristine AU - Ödman, Pia AU - Svensson, Ingrid AU - Antfolk, Christian AU - Malesevic, Nebojsa AU - Jeglinsky, Ira AU - Saha, Sanjib AU - Hägglund, Gunnar PY - 2019/10/9 TI - Improving the Health of Individuals With Cerebral Palsy: Protocol for the Multidisciplinary Research Program MOVING ON WITH CP JO - JMIR Res Protoc SP - e13883 VL - 8 IS - 10 KW - cerebral palsy KW - health care KW - pain KW - health KW - disability KW - multidisciplinary N2 - 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 UR - https://www.researchprotocols.org/2019/10/e13883 UR - http://dx.doi.org/10.2196/13883 UR - http://www.ncbi.nlm.nih.gov/pubmed/31599737 ID - info:doi/10.2196/13883 ER - TY - JOUR AU - Stetten, E. Nichole AU - LeBeau, Kelsea AU - Aguirre, A. Maria AU - Vogt, B. Alexis AU - Quintana, R. Jazmine AU - Jennings, R. Alexis AU - Hart, Mark PY - 2019/9/30 TI - Analyzing the Communication Interchange of Individuals With Disabilities Utilizing Facebook, Discussion Forums, and Chat Rooms: Qualitative Content Analysis of Online Disabilities Support Groups JO - JMIR Rehabil Assist Technol SP - e12667 VL - 6 IS - 2 KW - persons with disabilities KW - social media KW - social support KW - online social networking KW - internet KW - psychosocial support systems KW - qualitative research N2 - 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. UR - http://rehab.jmir.org/2019/2/e12667/ UR - http://dx.doi.org/10.2196/12667 UR - http://www.ncbi.nlm.nih.gov/pubmed/31573937 ID - info:doi/10.2196/12667 ER - TY - JOUR AU - Terrill, L. Alexandra AU - MacKenzie, J. Justin AU - Reblin, Maija AU - Einerson, Jackie AU - Ferraro, Jesse AU - Altizer, Roger PY - 2019/9/6 TI - A Collaboration Between Game Developers and Rehabilitation Researchers to Develop a Web-Based App for Persons With Physical Disabilities: Case Study JO - JMIR Rehabil Assist Technol SP - e13511 VL - 6 IS - 2 KW - spinal cord injury KW - software design KW - interdisciplinary health team KW - rehabilitation KW - internet N2 - 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. UR - http://rehab.jmir.org/2019/2/e13511/ UR - http://dx.doi.org/10.2196/13511 UR - http://www.ncbi.nlm.nih.gov/pubmed/31573927 ID - info:doi/10.2196/13511 ER - TY - JOUR AU - Nathan, P. Edward AU - Winkler, L. Sandra PY - 2019/08/29 TI - Amputees? Attitudes Toward Participation in Amputee Support Groups and the Role of Virtual Technology in Supporting Amputees: Survey Study JO - JMIR Rehabil Assist Technol SP - 14887 VL - 6 IS - 2 KW - amputation KW - amputee KW - survey KW - support KW - support group KW - technology KW - virtual KW - virtual reality N2 - 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. UR - http://rehab.jmir.org/2019/2/e14887/ UR - http://dx.doi.org/10.2196/14887 UR - http://www.ncbi.nlm.nih.gov/pubmed/31469085 ID - info:doi/10.2196/14887 ER - TY - JOUR AU - Setiawan, Agus I. Made AU - Zhou, Leming AU - Alfikri, Zakiy AU - Saptono, Andi AU - Fairman, D. Andrea AU - Dicianno, Edward Brad AU - Parmanto, Bambang PY - 2019/04/25 TI - An Adaptive Mobile Health System to Support Self-Management for Persons With Chronic Conditions and Disabilities: Usability and Feasibility Studies JO - JMIR Form Res SP - e12982 VL - 3 IS - 2 KW - mHealth KW - adaptive mHealth KW - mobile apps KW - telemedicine KW - personalized medicine KW - self-management KW - self-care KW - caregivers KW - chronic disease KW - persons with disabilities N2 - 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. UR - http://formative.jmir.org/2019/2/e12982/ UR - http://dx.doi.org/10.2196/12982 UR - http://www.ncbi.nlm.nih.gov/pubmed/31021324 ID - info:doi/10.2196/12982 ER - TY - JOUR AU - Routhier, François AU - Mortenson, Ben W. AU - Demers, Louise AU - Mahmood, Atiya AU - Chaudhury, Habib AU - Martin Ginis, A. Kathleen AU - Miller, C. William PY - 2019/04/16 TI - Mobility and Participation of People With Disabilities Using Mobility Assistive Technologies: Protocol for a Mixed-Methods Study JO - JMIR Res Protoc SP - e12089 VL - 8 IS - 4 KW - mobility limitation KW - physical barriers KW - social participation KW - assistive technology N2 - 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 intégré universitaire de santé 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 UR - https://www.researchprotocols.org/2019/4/e12089/ UR - http://dx.doi.org/10.2196/12089 UR - http://www.ncbi.nlm.nih.gov/pubmed/30990459 ID - info:doi/10.2196/12089 ER - TY - JOUR AU - Watfern, Chloe AU - Heck, Chloe AU - Rule, Chris AU - Baldwin, Peter AU - Boydell, M. Katherine PY - 2019/03/28 TI - Feasibility and Acceptability of a Mental Health Website for Adults With an Intellectual Disability: Qualitative Evaluation JO - JMIR Ment Health SP - e12958 VL - 6 IS - 3 KW - mental health KW - internet KW - intellectual disability KW - qualitative evaluation KW - qualitative research KW - health services accessibility N2 - 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. UR - http://mental.jmir.org/2019/3/e12958/ UR - http://dx.doi.org/10.2196/12958 UR - http://www.ncbi.nlm.nih.gov/pubmed/30920378 ID - info:doi/10.2196/12958 ER - TY - JOUR AU - Lai, Byron AU - Wilroy, Jereme AU - Young, Hui-Ju AU - Howell, Jennifer AU - Rimmer, H. James AU - Mehta, Tapan AU - Thirumalai, Mohanraj PY - 2019/03/19 TI - A Mobile App to Promote Adapted Exercise and Social Networking for People With Physical Disabilities: Usability Study JO - JMIR Form Res SP - e11689 VL - 3 IS - 1 KW - exercise KW - telehealth KW - rehabilitation KW - mHealth N2 - 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). UR - http://formative.jmir.org/2019/1/e11689/ UR - http://dx.doi.org/10.2196/11689 UR - http://www.ncbi.nlm.nih.gov/pubmed/30888325 ID - info:doi/10.2196/11689 ER - TY - JOUR AU - Litchman, L. Michelle AU - Tran, MJ AU - Dearden, E. Susan AU - Guo, Jia-Wen AU - Simonsen, E. Sara AU - Clark, Lauren PY - 2019/03/14 TI - What Women With Disabilities Write in Personal Blogs About Pregnancy and Early Motherhood: Qualitative Analysis of Blogs JO - JMIR Pediatr Parent SP - e12355 VL - 2 IS - 1 KW - disabled persons KW - pregnancy KW - blog KW - women?s health KW - parenting KW - mothers KW - spinal cord injury KW - autism KW - traumatic brain injury N2 - 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. UR - http://pediatrics.jmir.org/2019/1/e12355/ UR - http://dx.doi.org/10.2196/12355 UR - http://www.ncbi.nlm.nih.gov/pubmed/31518332 ID - info:doi/10.2196/12355 ER - TY - JOUR PY - 2014// TI - Roles of Health Literacy in Relation to Social Determinants of Health and Recommendations for Informatics-Based Interventions: Systematic Review JO - Online J Public Health Inform SP - e5460 VL - 6 IS - 2 UR - UR - http://dx.doi.org/10.5210/ojphi.v6i2.5460 UR - http://www.ncbi.nlm.nih.gov/pubmed/25422722 ID - info:doi/10.5210/ojphi.v6i2.5460 ER -