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 - 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 - 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 - Oudshoorn, Cathelijn AU - Frielink, Noud AU - Riper, Heleen AU - Embregts, Petri PY - 2024/11/12 TI - Acceptance and Use of eHealth in Support and Psychological Therapy for People With Intellectual Disabilities: Two Cross-Sectional Studies of Health Care Professionals JO - JMIR Form Res SP - e52788 VL - 8 KW - acceptance KW - health care professionals KW - intellectual disabilities KW - eHealth KW - disability KW - psychological therapy KW - support KW - cross-sectional survey N2 - Background: Acceptance of health care professionals is of paramount importance for the uptake and implementation of eHealth. The Unified Theory of Acceptance and Use of Technology (UTAUT) model is a widely used framework for studying health care professionals? acceptance and actual use of eHealth among general client populations. However, there is limited understanding of the eHealth acceptance of health care professionals working with people with intellectual disabilities (ID). Objective: This study aimed to explore the applicability of the UTAUT model toward understanding the acceptance, intention to use, and actual use of eHealth among support staff and therapists working with people with ID. Methods: A total of 2 cross-sectional survey studies were conducted among health care professionals from 5 health care organizations for people with ID in the Netherlands in 2018 (n=311) and in 2021 during the COVID-19 pandemic (n=326). In addition to confirmatory and exploratory factor analyses to evaluate both the original UTAUT model and an extended version, descriptive analysis was used to explore participants? characteristics, acceptance levels, and eHealth usage. Moderator analysis and multiple regression analysis were also used. Results: A confirmatory factor analysis indicated a poor fit for both the original 4-factor UTAUT model and the extended version. An exploratory factor analysis was then conducted, resulting in a more satisfactory 5-factor model after removing 1 item with a factor loading <.40. Internal consistency of the 5 factors ranged from acceptable to good (Cronbach ?=.76-.85). Collectively, all factors predicted the intention to use eHealth in 2018 (R2=0.47; F5,305=54.885; P<.001) and in 2021 (R2=0.43; F5,320=49.32; P<.001). Participants scored moderately on all 5 acceptance factors in both 2018 and 2021. Moderator analysis indicated that age and voluntariness influence the relationship between factors that determined acceptance and intention to use eHealth. Conclusions: The findings from 2 cross-sectional studies conducted in 2018 and 2021, using an extended UTAUT model, gave a deeper understanding of eHealth acceptance among health care professionals who work with people with ID. UR - https://formative.jmir.org/2024/1/e52788 UR - http://dx.doi.org/10.2196/52788 UR - http://www.ncbi.nlm.nih.gov/pubmed/ ID - info:doi/10.2196/52788 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 - Adam, Esmee AU - Meiland, Franka AU - Frielink, Noud AU - Meinders, Erwin AU - Smits, Reon AU - Embregts, Petri AU - Smaling, Hanneke PY - 2024/6/21 TI - User Requirements and Perceptions of a Sensor System for Early Stress Detection in People With Dementia and People With Intellectual Disability: Qualitative Study JO - JMIR Form Res SP - e52248 VL - 8 KW - stress detection KW - sensor system KW - garment integrated KW - wearable KW - user requirements KW - dementia KW - intellectual disability KW - intellectual disabilities KW - long-term care KW - perceptions KW - wearables KW - qualitative study KW - residents KW - communication impairment KW - impairments KW - garment sensor N2 - Background: Timely detection of stress in people with dementia and people with an intellectual disability (ID) may reduce the occurrence of challenging behavior. However, detecting stress is often challenging as many long-term care (LTC) residents with dementia and residents with ID have communication impairments, limiting their ability to express themselves. Wearables can help detect stress but are not always accepted by users and are uncomfortable to wear for longer periods. Integrating sensors into clothing may be a more acceptable approach for users in LTC. To develop a sensor system for early stress detection that is accepted by LTC residents with dementia and residents with ID, understanding their perceptions and requirements is essential. Objective: This study aimed to (1) identify user requirements for a garment-integrated sensor system (wearable) for early stress detection in people with dementia and people with ID, (2) explore the perceptions of the users toward the sensor system, and (3) investigate the implementation requirements in LTC settings. Methods: A qualitative design with 18 focus groups and 29 interviews was used. Focus groups and interviews were conducted per setting (dementia, ID) and target group (people with dementia, people with ID, family caregivers, health care professionals). The focus groups were conducted at 3 time points within a 6-month period, where each new focus group built on the findings of previous rounds. The data from each round were used to (further) develop the sensor system. A thematic analysis with an inductive approach was used to analyze the data. Results: The study included 44 participants who expressed a positive attitude toward the idea of a garment-integrated sensor system but also identified some potential concerns. In addition to early stress detection, participants recognized other potential purposes or benefits of the sensor system, such as identifying triggers for challenging behavior, evaluating intervention effects, and diagnostic purposes. Participants emphasized the importance of meeting specific system requirements, such as washability and safety, and user requirements, such as customizability and usability, to increase user acceptance. Moreover, some participants were concerned the sensor system could contribute to the replacement of human contact by technology. Important factors for implementation included the cost of the sensor system, added value to resident and health care professionals, and education for all users. Conclusions: The idea of a garment-integrated sensor system for early stress detection in LTC for people with dementia and people with ID is perceived as positive and promising by stakeholders. To increase acceptability and implementation success, it is important to develop an easy-to-use, customizable wearable that has a clear and demonstrable added value for health care professionals and LTC residents. The next step involves pilot-testing the developed wearable with LTC residents with dementia and residents with ID in clinical practice. UR - https://formative.jmir.org/2024/1/e52248 UR - http://dx.doi.org/10.2196/52248 UR - http://www.ncbi.nlm.nih.gov/pubmed/ ID - info:doi/10.2196/52248 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 - Siebelink, M. Nienke AU - van Dam, N. Kirstin AU - Lukkien, M. Dirk R. AU - Boon, Brigitte AU - Smits, Merlijn AU - van der Poel, Agnes PY - 2024/2/28 TI - Action Opportunities to Pursue Responsible Digital Care for People With Intellectual Disabilities: Qualitative Study JO - JMIR Ment Health SP - e48147 VL - 11 KW - ethics KW - value-based health care KW - digital technology KW - intellectual disability KW - digital care N2 - Background: Responsible digital care refers to any intentional systematic effort designed to increase the likelihood of a digital care technology developed through ethical decision-making, being socially responsible and aligned with the values and well-being of those impacted by it. Objective: We aimed to present examples of action opportunities for (1) designing ?technology?; (2) shaping the ?context? of use; and (3) adjusting the behavior of ?users? to guide responsible digital care for people with intellectual disabilities. Methods: Three cases were considered: (1) design of a web application to support the preparation of meals for groups of people with intellectual disabilities, (2) implementation of an app to help people with intellectual disabilities regulate their stress independently, and (3) implementation of a social robot to stimulate interaction and physical activity among people with intellectual disabilities. Overall, 26 stakeholders participated in 3 multistakeholder workshops (case 1: 10/26, 38%; case 2: 10/26, 38%; case 3: 6/26, 23%) based on the ?guidance ethics approach.? We identified stakeholders? values based on bottom-up exploration of experienced and expected effects of using the technology, and we formulated action opportunities for these values in the specific context of use. Qualitative data were analyzed thematically. Results: Overall, 232 effects, 33 values, and 156 action opportunities were collected. General and case-specific themes were identified. Important stakeholder values included quality of care, autonomy, efficiency, health, enjoyment, reliability, and privacy. Both positive and negative effects could underlie stakeholders? values and influence the development of action opportunities. Action opportunities comprised the following: (1) technology: development of the technology (eg, user experience and customization), technology input (eg, recipes for meals, intervention options for reducing stress, and activities), and technology output (eg, storage and use of data); (2) context: guidelines, training and support, policy or agreements, and adjusting the physical environment in which the technology is used; and (3) users: integrating the technology into daily care practice, by diminishing (eg, ?letting go? to increase the autonomy of people with intellectual disabilities), retaining (eg, face-to-face contact), and adding (eg, evaluation moments) certain behaviors of care professionals. Conclusions: This is the first study to provide insight into responsible digital care for people with intellectual disabilities by means of bottom-up exploration of action opportunities to take account of stakeholders? values in designing technology, shaping the context of use, and adjusting the behavior of users. Although part of the findings may be generalized, case-specific insights and a complementary top-down approach (eg, predefined ethical frameworks) are essential. The findings represent a part of an ethical discourse that requires follow-up to meet the dynamism of stakeholders? values and further develop and implement action opportunities to achieve socially desirable, ethically acceptable, and sustainable digital care that improves the lives of people with intellectual disabilities. UR - https://mental.jmir.org/2024/1/e48147 UR - http://dx.doi.org/10.2196/48147 UR - http://www.ncbi.nlm.nih.gov/pubmed/38416547 ID - info:doi/10.2196/48147 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 - Müssener, Ulrika AU - Henriksson, Pontus AU - Gustavsson, Catharina AU - Henriksson, Hanna AU - Tyrberg, J. Mårten AU - Johansson, Stefan AU - Alfredsson Ågren, Kristin PY - 2023/7/28 TI - Promoting Healthy Behaviors Among Adolescents and Young Adults With Intellectual Disability: Protocol for Developing a Digital Intervention With Co-Design Workshops JO - JMIR Res Protoc SP - e47877 VL - 12 KW - intellectual disability KW - lifestyle behavior KW - eHealth KW - co-design KW - digital intervention KW - lifestyle KW - adolescents KW - young adult KW - healthy diet N2 - Background: Intellectual disability (ID) is a neurodevelopmental disorder associated with a poorer health profile and higher mortality. Young people with ID have more sedentary lifestyles than their typically developing peers. Consequently, this group is at significant risk of developing lifestyle diseases (ie, noncommunicable diseases) later in life. Increasing physical activity and eating a healthier diet have been argued to be effective ways to improve the health of adolescents and young adults with ID. Digital interventions are a viable option for improving health behaviors. Objective: This research protocol describes a co-design approach using workshops to develop a digital intervention that promotes healthy behaviors, including increasing physical activity and eating a healthier diet, among adolescents and young adults with ID. Methods: A participatory design using a co-design approach will be applied as a strategy to include potential users of the digital intervention and other stakeholders in the research process, comprising research design, data collection, and data analysis. A total of 7 to 10 workshops will be conducted aimed at developing a digital intervention and will include procedures for assessing needs; facilitators and barriers to health promotion; physical, mental, and social well-being; participation; and relationships. The workshops will include 12 to 18 stakeholders with experience of clinical practice and research related to young people with ID, including relatives, as well as adolescents and young adults (aged 16-25 years) with mild to moderate ID. Participants will perform a mixture of individual and group work using whiteboards, sticky notes, felt-tip pens, cards, balls, stickers, and wireframe templates. Data analysis will take place concurrently with data collection as an iterative process. Transcribed data from the audio and video recordings of the groups? discussions will be analyzed following a qualitative methodological procedure. Results: This study protocol provides a systematic record of the scientific methodologies used when developing the digital intervention and provides insights into the potential practical solutions and challenges when following a co-design approach in which relatives and professionals, as well as adolescents and young adults with ID, are included as research partners. Recruitment of participants started in April 2023. Data collection, analysis, and reporting will be completed in December 2023. Conclusions: This study will explore the effectiveness of workshops at gathering rich, reliable, and valid data in a co-design approach with participants. The results will provide increased knowledge in how to use technology to develop novel, evidence-based, and scalable interventions that adolescents and young adults with ID can and want to use to motivate physical activity and a healthier diet. The project will provide a simple and cognitively accessible digital solution for promoting lifestyle behaviors tailored to the needs of adolescents and young adults with ID. International Registered Report Identifier (IRRID): PRR1-10.2196/47877 UR - https://www.researchprotocols.org/2023/1/e47877 UR - http://dx.doi.org/10.2196/47877 UR - http://www.ncbi.nlm.nih.gov/pubmed/37505807 ID - info:doi/10.2196/47877 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 - Paulauskaite, Laura AU - Totsika, Vasiliki AU - Rivas, Carol PY - 2022/11/7 TI - Relationships and Sex Education Outcomes for Students With Intellectual Disability: Protocol for the Development of a Core Outcome Set JO - JMIR Res Protoc SP - e39921 VL - 11 IS - 11 KW - core outcome set KW - relationships and sex education KW - intellectual disability KW - students N2 - Background: People with intellectual disability are twice as likely to experience sexual abuse, unintended pregnancies, and sexually transmitted diseases as people in the general population. Despite this, very little is known about how to deliver relationships and sex education effectively to this vulnerable population, how to measure the impact of its delivery in schools, and what stakeholders perceive as important outcomes of this education. Objective: To address these urgent issues, this study aims to develop a stakeholder consensus?based core outcome set of relationships and sex education for use in research and educational settings with students with intellectual disability. Methods: The study will use a 2-stage mixed methods design. The first stage will involve a systematic review of relationships and sex education outcomes reported in the literature, followed by qualitative exploration with caregivers, teachers and school staff, policy makers, and researchers to investigate their perspectives of meaningful outcomes of this education. Students with intellectual disability will be enabled to take part to express their views on outcomes of importance to them. The second stage will use findings from stage 1 in a 2-round web-based Delphi study with caregivers, teachers and school staff, policy makers, and researchers to develop consensus on proposed outcomes for the evaluation of relationships and sex education with this population. Results: As of September 2022, we have completed a systematic review and recruited 56 stakeholders (n=53, 95%, adults and n=3, 5%, students with intellectual disability) for the first stage of the study. We are still recruiting students with intellectual disability. Data analysis has not started yet. Recruitment for the second stage will commence in November 2022. We expect to complete the study by October 2023 and publish the results by the end of 2024. Conclusions: The development of a core outcome set of relationships and sex education will provide a significant first step to assist the implementation, delivery, evaluation, and sustainability of relationships and sex education for students with intellectual disability. Key audiences will be teachers, researchers, policy makers, and decision makers. Trial Registration: Core Outcome Measures in Effectiveness Trials 1787; https://www.comet-initiative.org/Studies/Details/1787 International Registered Report Identifier (IRRID): PRR1-10.2196/39921 UR - https://www.researchprotocols.org/2022/11/e39921 UR - http://dx.doi.org/10.2196/39921 UR - http://www.ncbi.nlm.nih.gov/pubmed/36342756 ID - info:doi/10.2196/39921 ER - TY - JOUR AU - 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 - 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 - Thakur, Anupam AU - Pereira, Cheryl AU - Hardy, Jenny AU - Bobbette, Nicole AU - Sockalingam, Sanjeev AU - Lunsky, Yona PY - 2021/10/7 TI - Virtual Education Program to Support Providers Caring for People With Intellectual and Developmental Disabilities During the COVID-19 Pandemic: Rapid Development and Evaluation Study JO - JMIR Ment Health SP - e28933 VL - 8 IS - 10 KW - COVID-19 KW - coronavirus KW - pandemic KW - intellectual disability KW - mental health KW - community of practice KW - ECHO, virtual KW - capacity-building N2 - Background: People with intellectual and developmental disabilities are at increased health-related risk due to the COVID-19 pandemic. Virtual training programs that support providers in caring for the physical and mental health needs of this population, as well provide psychological support to the providers themselves, are needed during the pandemic. Objective: This paper describes the design, delivery, and evaluation of a virtual educational COVID-19?focused Extension for Community Healthcare Outcomes program to support providers during the COVID-19 pandemic in caring for the mental health of people with intellectual and developmental disabilities. Methods: A rapid design thinking approach was used to develop a 6-session program that incorporates mindfulness practice, a wellness check, COVID-19?related research and policy updates, a didactic presentation on a combination mental health and COVID-19 related topic, and a case-based discussion to encourage practical learning. We used the first 5 outcome levels of Moore?s evaluation framework?focusing on participation, satisfaction, learning, self-efficacy, and change in practice?which were rated (out of 5) by care providers from health and disability service sectors, as well as additional reflection measures about innovations to the program. Qualitative feedback from open-text responses from participants were analyzed using modified manifest content analysis. Results: A total of 104 care providers from health and disability service sectors participated in the program. High levels of engagement (81 participants per session on average) and satisfaction (overall satisfaction score: mean 4.31, SD 0.17) were observed. Self-efficacy (score improvement: 19.8%), support, and coping improved. Participants also rated the newly developed COVID-19 program and its innovative components highly. Open text feedback showed participants felt that the Extension for Community Healthcare Outcomes program expanded their knowledge and competency and created a sense of being part of a community of practice; provided value for the COVID-19 innovations; supported resource-sharing within and beyond program participants; and facilitated changes to participants? approaches to client care in practice and increased participants? confidence in supporting clients and families. Conclusions: The Extension for Community Healthcare Outcomes program is an effective model for capacity-building programs with a shared-learning approach. Future iterations should include targeted evaluation of long-term outcomes such as staff burnout. UR - https://mental.jmir.org/2021/10/e28933 UR - http://dx.doi.org/10.2196/28933 UR - http://www.ncbi.nlm.nih.gov/pubmed/34617917 ID - info:doi/10.2196/28933 ER - TY - JOUR AU - Simons, Rianne AU - Koordeman, Renske AU - de Looff, Peter AU - Otten, Roy PY - 2021/7/21 TI - Physiological Measurements of Stress Preceding Incidents of Challenging Behavior in People With Severe to Profound Intellectual Disabilities: Longitudinal Study Protocol of Single-Case Studies JO - JMIR Res Protoc SP - e24911 VL - 10 IS - 7 KW - challenging behavior KW - electrodermal activity KW - heart rate KW - intellectual disability KW - single-case research KW - stress N2 - Background: Clients with severe to profound intellectual disabilities (SPID) and challenging behavior (CB) and the professional caregivers that support them are vulnerable to high stress levels, which negatively impact their well-being and the quality of care. CB is thought to result from an increase in the intensity and frequency of clients? stress experiences. In turn, staff members experience stress in dealing with this behavior, and stressed staff members might behave in ways that increase clients? stress levels, contributing to the origin and maintenance of CB. Research into these dyadic interactions between clients and staff is scarce for people with SPID, especially in real-life situations. The barriers of studying stress in this population include clients? difficulties in communicating stress experiences and the lack of an objective continuous measure of stress. Objective: This paper presents a protocol for studying patterns of physiological stress in 15 client-caregiver dyads in the 30 minutes preceding incidents of CB compared to control periods without CB and the interplay between the stress levels of clients and professional caregivers. Methods: We will conduct 15 single-case studies to assess patterns of physiological stress in dyads of clients with SPID and professional caregivers prior to CB in several Dutch residential institutes. Client-caregiver dyads will wear the Empatica E4 wristband for 20 sessions of 3 to 8 hours without interruptions of daily routines while caregivers report clients? CB. The physiological measures obtained will be electrodermal activity (microsiemens) and heart rate (beats per minute). A multilevel model with repeated measures at the incident level nested within the person level will be applied, employing separate models for electrodermal activity and heart rate to compare stress levels in the 30 minutes prior to incidents with control epochs. Covariates in the models include movement, temperature, and gender. In addition, cross-recurrence quantification analyses will be performed to study the synchronization between the stress levels of clients and professional caregivers. Results: The Ethics Committee of the Radboud University (NL-number: NL71683.091.19) approved the study on February 12, 2020. In total, 15 organizations have declared their commitment to participate in the study. The first result is expected in the spring of 2022. Conclusions: Study results will demonstrate whether changes in patterns of electrodermal activity and heart rate are apparent in the 30 minutes preceding an incident of CB compared to baseline levels when the client does not engage in CB. The synchronization between caregivers? and clients? physiological stress levels will be explored with cross-recurrence quantification analyses. Insights into the physiological stress levels of clients and caregivers may contribute to a reduction of CB and an improvement of both clients? and caregivers? safety and well-being. International Registered Report Identifier (IRRID): DERR1-10.2196/24911 UR - https://www.researchprotocols.org/2021/7/e24911 UR - http://dx.doi.org/10.2196/24911 UR - http://www.ncbi.nlm.nih.gov/pubmed/34287220 ID - info:doi/10.2196/24911 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 - 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 - de Looff, Christiaan Pieter AU - Nijman, Henk AU - Didden, Robert AU - Noordzij, L. Matthijs PY - 2021/5/10 TI - Usability and Acceptance of Wearable Biosensors in Forensic Psychiatry: Cross-sectional Questionnaire Study JO - JMIR Form Res SP - e18096 VL - 5 IS - 5 KW - forensic psychiatry KW - wearable biosensors KW - intellectual disabilities KW - usability KW - acceptance KW - continuous use KW - emotion regulation KW - behavior regulation N2 - Background: The use of wearable biosensor devices for monitoring and coaching in forensic psychiatric settings yields high expectations for improved self-regulation of emotions and behavior in clients and staff members. More so, if clients have mild intellectual disabilities (IQ 50-85), they might benefit from these biosensors as they are easy to use in everyday life, which ensures that clients can practice with the devices in multiple stress and arousal-inducing situations. However, research on (continuous) use and acceptance of biosensors in forensic psychiatry for clients with mild intellectual disabilities and their caretakers is scarce. Although wearable biosensors show promise for health care, recent research showed that the acceptance and continuous use of wearable devices in consumers is not as was anticipated, probably due to low expectations. Objective: The main goal of this study was to investigate the associations between and determinants of the expectation of usability, the actual experienced usability, and the intention for continuous use of biosensors. Methods: A total of 77 participants (31 forensic clients with mild intellectual disabilities and 46 forensic staff members) participated in a 1-week trial. Preceding the study, we selected 4 devices thought to benefit the participants in domains of self-regulation, physical health, or sleep. Qualitative and quantitative questionnaires were used that explored the determinants of usability, acceptance, and continuous use of biosensors. Questionnaires consisted of the System Usability Scale, the Technology Acceptance Model questionnaire, and the extended expectation confirmation model questionnaire. Results: Only the experienced usability of the devices was associated with intended continuous use. Forensic clients scored higher on acceptance and intention for continuous use than staff members. Moderate associations were found between usability with acceptance and continuous use. Staff members showed stronger associations between usability and acceptance (r=.80, P<.001) and usability and continuous use (r=.79, P<.001) than clients, who showed more moderate correlations between usability and acceptance (r=.46, P=.01) and usability and continuous use (r=.52, P=.003). The qualitative questionnaires in general indicated that the devices were easy to use and gave clear information. Conclusions: Contrary to expectations, it was the actual perceived usability of wearing a biosensor that was associated with continuous use and to a much lesser extent the expectancy of usability. Clients scored higher on acceptance and intention for continuous use, but associations between usability and both acceptance and continuous use were markedly stronger in staff members. This study provides clear directions on how to further investigate these associations. For example, whether this is a true effect or due to a social desirability bias in the client group must be investigated. Clients with mild intellectual disabilities might benefit from the ease of use of these devices and their continuing monitoring and coaching apps. For these clients, it is especially important to develop easy-to-use biosensors with a minimum requirement on cognitive capacity to increase usability, acceptance, and continuous use. UR - https://formative.jmir.org/2021/5/e18096 UR - http://dx.doi.org/10.2196/18096 UR - http://www.ncbi.nlm.nih.gov/pubmed/33970115 ID - info:doi/10.2196/18096 ER - TY - JOUR AU - Wang, Aiwei AU - Gao, Yang AU - Wang, Jingjing AU - Tong, K. Tomas AU - Sun, Yan AU - Yu, Siyue AU - Zhao, Hong AU - Zou, Daozhi AU - Zhang, Ziheng AU - Qi, Yuling AU - Zuo, Nan AU - Bu, Danran AU - Zhang, Dexing AU - Xie, Yaojie AU - Baker, S. Julien PY - 2021/3/22 TI - Effects of a School-Based Physical Activity Intervention for Obesity and Health-Related Physical Fitness in Adolescents With Intellectual Disability: Protocol for a Randomized Controlled Trial JO - JMIR Res Protoc SP - e25838 VL - 10 IS - 3 KW - children KW - intellectual disability KW - physical activity KW - overweight KW - obesity KW - intervention N2 - Background: Childhood obesity accompanied by lower levels of health-related physical fitness (HRPF) is a major threat to public health both internationally and locally. Children with intellectual disability, especially adolescents, have a higher risk of being overweight/obese and having poor HRPF levels. Therefore, more interventions are needed to help this population attain their optimal health levels. However, there has been relatively limited research on this population compared with on their typically developing peers. Objective: The proposed study aims to fill this knowledge gap by developing and examining the success of a physical activity (PA) intervention for the target population. Methods: The proposed study will be a 12-week, school-based randomized controlled trial. The participants (N=48) will be recruited from special schools for students with mild intellectual disability and then randomly allocated to either the intervention group (IG) or the wait-list control group (CG). During the intervention period, the participants in the IG will receive a fun game?based moderate-to-vigorous PA (MVPA) training program (2 sessions/week, 60 minutes/session, for a total of 24 sessions). The intensity of the activities will increase in a progressive manner. Participants in the CG will receive no program during the study period, but the same PA program will be provided to them after the completion of the study. To observe and evaluate the sustaining effects of the intervention, follow-up testing will be scheduled for the participants 12 weeks after the intervention concludes. The study outcomes will include primary outcomes (obesity- and fitness-related outcomes) and a secondary outcome (blood pressure). All of the measurements will be taken at 3 time points. After the follow-up tests, the same PA training program will be provided to the participants in the CG. Results: This study is ongoing. The participants were recruited from October 2020 to November 2020. The total duration of the study is 13 months. Study results are expected at the end of 2021. Conclusions: The proposed study is expected to reduce obesity and improve HRPF levels in children with intellectual disability. If proven effective, the intervention will be made accessible to more special schools and mainstream schools with students with intellectual disability. Furthermore, the study can serve as an example for international researchers, policy makers, and members of the public who are seeking to tackle the problem of obesity and poor HRPF among children with intellectual disability. Trial Registration: ClinicalTrials.gov NCT04554355; https://www.clinicaltrials.gov/ct2/show/NCT04554355 International Registered Report Identifier (IRRID): PRR1-10.2196/25838 UR - https://www.researchprotocols.org/2021/3/e25838 UR - http://dx.doi.org/10.2196/25838 UR - http://www.ncbi.nlm.nih.gov/pubmed/33749611 ID - info:doi/10.2196/25838 ER - TY - JOUR AU - Patel, Shrujna AU - Boulton, Ann Kelsie AU - Redoblado-Hodge, Antoinette Marie AU - Papanicolaou, Angela AU - Barnett, Diana AU - Bennett, Beverley AU - Drevensek, Suzi AU - Cramsie, Jane AU - Ganesalingam, Kalaichelvi AU - Ong, Natalie AU - Rozsa, Magdalen AU - Sutherland, Rebecca AU - Williamsz, Marcia AU - Pokorski, Izabella AU - Song, Christine Yun Ju AU - Silove, Natalie AU - Guastella, John Adam PY - 2021/1/19 TI - The Acceptability and Efficacy of Electronic Data Collection in a Hospital Neurodevelopmental Clinic: Pilot Questionnaire Study JO - JMIR Form Res SP - e18214 VL - 5 IS - 1 KW - electronic data collection KW - family-centered care KW - hospital-based data collection N2 - Background: There is a growing need for cost-efficient and patient-centered approaches to support families in hospital- and community-based neurodevelopmental services. For such purposes, electronic data collection (EDC) may hold advantages over paper-based data collection. Such EDC approaches enable automated data collection for scoring and interpretation, saving time for clinicians and services and promoting more efficient service delivery. Objective: This pilot study evaluated the efficacy of EDC for the Child Development Unit, a hospital-based diagnostic assessment clinic in the Sydney Children?s Hospital Network. Caregiver response rates and preference for EDC or paper-based methods were evaluated as well as the moderating role of demographic characteristics such as age, level of education, and ethnic background. Methods: Families were sent either a paper-based questionnaire via post or an electronic mail link for completion before attending their first on-site clinic appointment for assessment. A total of 62 families were provided a paper version of the questionnaire, while 184 families were provided the online version of the same questionnaire. Results: Completion rates of the questionnaire before the first appointment were significantly higher for EDC (164/184, 89.1%) in comparison to paper-based methods (24/62, 39%; P<.001). Within the EDC group, a vast majority of respondents indicated a preference for completing the questionnaire online (151/173, 87.3%), compared to paper completion (22/173, 12.7%; P<.001). Of the caregiver demographic characteristics, only the respondent?s level of education was associated with modality preference, such that those with a higher level of education reported a greater preference for EDC (P=.04). Conclusions: These results show that EDC is feasible in hospital-based clinics and has the potential to offer substantial benefits in terms of centralized data collation, time and cost savings, efficiency of service, and resource allocation. The results of this study therefore support the continued use of electronic methods to improve family-centered care in clinical practices. UR - http://formative.jmir.org/2021/1/e18214/ UR - http://dx.doi.org/10.2196/18214 UR - http://www.ncbi.nlm.nih.gov/pubmed/33464217 ID - info:doi/10.2196/18214 ER - TY - JOUR AU - Carnemolla, Phillippa PY - 2020/8/7 TI - Individualized Apartment Accommodation for People With Intellectual Disability: Protocol for a Qualitative Study Examining the Well-Being and Support Outcomes Linking Housing and Health JO - JMIR Res Protoc SP - e18248 VL - 9 IS - 8 KW - POE KW - postoccupancy evaluation KW - health and well-being KW - disability KW - housing KW - disability housing KW - intellectual disability KW - built environment KW - allied health care KW - disability support KW - group home KW - community support KW - community health KW - qualitative KW - autonomy N2 - Background: Understanding the outcomes associated with both receiving and providing support to people with intellectual disability in specific settings can facilitate the alignment of health providers, community care providers, architects, and urban planners to strengthen levels of autonomy and community participation of people with intellectual disability living in the community. This study explores the impact of providing support (available 24 hours a day) for people with intellectual disability in a high-density apartment. It seeks the perspectives of people with intellectual disability who have moved into an apartment from a group home (where 4-6 people with disability live), their families, and support staff. It will enable comparison between two models of supported accommodation, group homes and individualized apartments, in a community setting. Objective: The aims of this study are to explore the impact of an individualized apartment model of supported accommodation in a high-density setting on the well-being, autonomy, and participation of people with intellectual disability living and receiving support; the experience of providing care or support; and how this setting impacts the logistics of how quality support is provided. Methods: Qualitative research methods were employed as the primary means of collecting and analyzing data. There are two main sources of data in this study: (1) semistructured interviews with participants in up to 3 waves (pre, post 1, and post 2) and (2) pre- and postoccupancy evaluation data on the design, layout, and location details of the built environments. Coded interview data will be paired with pre- and postoccupancy evaluations of the two accommodation settings. Results: As of May 2020, we have recruited 55 participants. There have been 96 interviews conducted in 2 waves with people who have moved into supported accommodation, families, and staff. Collected data are currently being analyzed. We expect the results of the trial to be published in a peer-reviewed journal in late 2020. Conclusions: This paper sets out a study of an alternative housing and support model for people with intellectual disability. It will capture personal experiences of people with intellectual disability receiving support in an apartment compared to their experiences in a group home. It will also capture the experiences of support staff working in the new setting and reveal how this differs from a group home setting. The inclusion of pre (group home) and post (apartment integrated into a community setting) measures addresses evaluative and comparative questions around the nature and impacts of the small-scale apartment and support model for both those who live and receive support, and those who support them. International Registered Report Identifier (IRRID): DERR1-10.2196/18248 UR - https://www.researchprotocols.org/2020/8/e18248 UR - http://dx.doi.org/10.2196/18248 UR - http://www.ncbi.nlm.nih.gov/pubmed/32493691 ID - info:doi/10.2196/18248 ER - TY - JOUR AU - Michalsen, Henriette AU - Wangberg, Camilla Silje AU - Hartvigsen, Gunnar AU - Jaccheri, Letizia AU - Muzny, Miroslav AU - Henriksen, André AU - Olsen, Isabel Monica AU - Thrane, Gyrd AU - Jahnsen, Birgitta Reidun AU - Pettersen, Gunn AU - Arntzen, Cathrine AU - Anke, Audny PY - 2020/6/29 TI - Physical Activity With Tailored mHealth Support for Individuals With Intellectual Disabilities: Protocol for a Randomized Controlled Trial JO - JMIR Res Protoc SP - e19213 VL - 9 IS - 6 KW - intellectual disability KW - physical activity KW - technology KW - mHealth KW - mobile phone KW - goal attainment KW - social support KW - self-efficacy N2 - Background: Individuals with intellectual disabilities (IDs) have lower levels of physical activity (PA) and greater barriers for participation in fitness activities compared with members of the general population. As increased PA has positive effects on cardiovascular and psychosocial health, it is exceedingly important to identify effective interventions for use in everyday settings. Mobile health (mHealth) methods such as motion sensor games (exergames) and smartphone reminders for PA have been explored and found to be promising in individuals with IDs. Objective: The purpose of this study is to examine the effectiveness of an individually tailored PA program with motivational mHealth support on daily levels of PA in youth and adults with IDs. Methods: The trial uses a randomized controlled design comprising 30 intervention participants and 30 control group participants, aged 16 to 60 years, with sedentary lifestyles or low PA levels. While the controls will receive standard care, the intervention aims to increase the level of PA, measured as steps per day, as the primary outcome. Secondary outcome variables are body mass index, blood pressure, physical performance, social support for PA, self-efficacy in a PA setting, behavior problems, and goal attainment. The intervention involves the delivery of tailored mHealth support, using smartphones or tablets to create structure with focus on the communicative abilities of individual participants. Rewards and feedback are provided in order to motivate individuals to increase participation in PA. Participants in the intervention group, their close relatives, and care staff will be invited to participate in a preintervention goal-setting meeting, where goal attainment scaling will be used to select the participants? PA goals for the intervention period. All participants will be assessed at baseline, at 3 months, and at 6 months. Results: Enrollment was planned to start in April 2020 but will be delayed due to the pandemic situation. The main contribution of this paper is a detailed plan to run our study, which will produce new knowledge about tailored mHealth to support PA in individuals with intellectual disabilities. Conclusions: We expect the new intervention to perform better than standard care in terms of improved PA, improved self-efficacy, and social support for activities. Technology offers new opportunities to promote healthy behaviors. The results of the study will determine the effectiveness and sustainability of a tailored mHealth support intervention to increase PA in youth and adults with IDs. Trial Registration: ClinicalTrials.gov NCT04079439; https://clinicaltrials.gov/ct2/show/NCT04079439 International Registered Report Identifier (IRRID): PRR1-10.2196/19213 UR - http://www.researchprotocols.org/2020/6/e19213/ UR - http://dx.doi.org/10.2196/19213 UR - http://www.ncbi.nlm.nih.gov/pubmed/32437328 ID - info:doi/10.2196/19213 ER - TY - JOUR AU - Vereenooghe, Leen AU - Westermann, Kristian PY - 2019/11/14 TI - Feasibility and Acceptability of an Interactive Mental Well-Being Intervention for People With Intellectual Disabilities: Pilot Mixed Methods Study JO - JMIR Form Res SP - e15190 VL - 3 IS - 4 KW - intellectual disabilities KW - feasibility studies KW - tablet computer KW - mental health N2 - Background: The availability of both digital and traditional mental well-being interventions is rising, but these interventions typically do not consider people with intellectual disabilities as potential users. Objective: The study aimed to explore the acceptability and feasibility of a new digital intervention, developed with and for people with intellectual disabilities, to improve their subjective well-being. Methods: Using a single-group pre-post design, participants with intellectual disabilities and their caregivers completed the 4-week intervention. Mixed methods questionnaires assessed the acceptability of the intervention, in addition to self-report and proxy-report measures of subjective well-being and behavioral problems. Results: A total of 12 men with mild to moderate intellectual disabilities enrolled in and completed the study alongside 8 caregivers. Participant acceptability of the intervention was high, and feedback covered multiple aspects of the intervention, including (1) program concept and design, (2) program content, and (3) intervention usage. Self-rated mood barometers indicated mood improvements for 5 participants, deteriorations for 2 participants, and no observed changes for the remaining participants. Statistical analyses yielded no difference from pretest (median=79; range 39-86) to posttest (median=79; range 21-96) for subjective well-being in people with intellectual disabilities (W=10.5; P=.17) and for behavioral problems (W=14; P=.05). Conclusions: People with intellectual disabilities and their caregivers are receptive to using digital well-being interventions, and this research shows such interventions to be feasible in routine practice. Given the acceptability of the intervention, its potential efficacy can now be evaluated in people with intellectual disabilities and symptoms of reduced mental well-being. UR - http://formative.jmir.org/2019/4/e15190/ UR - http://dx.doi.org/10.2196/15190 UR - http://www.ncbi.nlm.nih.gov/pubmed/31724954 ID - info:doi/10.2196/15190 ER - TY - JOUR AU - Bang, Changbae AU - Nam, Yelin AU - Ko, Jae Eun AU - Lee, Wooseong AU - Kim, Byungjae AU - Choi, Yejin AU - Park, Rang Yu PY - 2019/10/24 TI - A Serious Game?Derived Index for Detecting Children With Heterogeneous Developmental Disabilities: Randomized Controlled Trial JO - JMIR Serious Games SP - e14924 VL - 7 IS - 4 KW - serious game KW - developmental disabilities KW - mobile game KW - cognitive screening tool KW - machine learning N2 - Background: Developmental disabilities are a set of heterogeneous delays or difficulties in one or more areas of neuropsychological development. Considering that childhood is an essential stage of brain development and developmental delays lead to personal or social burdens, the early detection of childhood developmental disabilities is important. However, early screening for developmental disabilities has been a challenge because of the fear of positive results, expensive tests, differences in diagnosis depending on examiners? abilities, and difficulty in diagnosis arising from the need for long-term follow-up observation. Objective: This study aimed to assess the feasibility of using a serious game?derived index to identify heterogeneous developmental disabilities. This study also examines the correlation between the game-derived index and existing neuropsychological test results. Methods: The randomized controlled trial involved 48 children with either normal development or developmental disabilities. In this clinical trial, we used 19 features (6 from the Korean-Wechsler Preschool and Primary Scale of Intelligence, 8 from the Psychoeducational Profile Revised, 2 from the Bruininks-Oseretsky Test of Motor Proficiency, Second Edition, and 3 from the Pediatric Evaluation of Disability Inventory) from neuropsychological tests and 9 (7 game scores, path accuracy, and completion rate) from the serious game, DoBrain. The following analysis was conducted based on participants? baseline information and neuropsychological test and game-derived index data for one week: (1) we compared the baseline information between the normal development and developmental disabilities groups; (2) then we measured the correlation between the game-derived index and the neuropsychological test scores for each group; and (3) we built a classifier based on the game-derived index with a Gaussian process method and then compared the area under the curve (AUC) with a model based on neuropsychological test results. Results: A total of 16 children (normal development=9; developmental disabilities=7) were analyzed after selection. Their developmental abilities were assessed before they started to play the serious games, and statistically significant differences were found in both groups. Specifically, the normal development group was more developed than the developmental disabilities group in terms of social function, gross motor function, full-scale IQ, and visual motor imitation, in that order. Similarly, the normal development group obtained a higher score on the game-derived index than the developmental disabilities group. In the correlation analysis between the game-derived index and the neuropsychological tests, the normal development group showed greater correlation with more variables than the developmental disabilities group. The game-derived index?based model had an AUC=0.9, a similar detection value as the neuropsychological test?based model?s AUC=0.86. Conclusions: A game-derived index based on serious games can detect children with heterogenous developmental disabilities. This suggests that serious games can be used as a potential screening tool for developmental disabilities. Trial Registration: Clinical Research Information Service KCT0003247; https://cris.nih.go.kr/cris/en/search/search_result_st01 .jsp?seq=12365 UR - http://games.jmir.org/2019/4/e14924/ UR - http://dx.doi.org/10.2196/14924 UR - http://www.ncbi.nlm.nih.gov/pubmed/31651408 ID - info:doi/10.2196/14924 ER - TY - JOUR AU - 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 - Gibson, Colin Ryan AU - Bouamrane, Matt-Mouley AU - Dunlop, Mark PY - 2019/03/04 TI - Design Requirements for a Digital Aid to Support Adults With Mild Learning Disabilities During Clinical Consultations: Qualitative Study With Experts JO - JMIR Rehabil Assist Technol SP - e10449 VL - 6 IS - 1 KW - learning disabilities KW - intellectual disability KW - communicative disorder KW - augmentative and alternative communications systems KW - primary care N2 - Background: Adults with mild learning disabilities (MLDs) face a plethora of obstacles when accessing effective health care. Central to many of these barriers is communication, with medical practitioners often remaining untrained on how to interact with patients who have learning disabilities (LDs). To date, research on how to promote this communication has largely centered on the development of low-tech aids. Objective: The objective of this study was to assess the feasibility of utilizing tablet technologies to promote communication between general practitioners and patients with MLDs. We achieved this by identifying a set of design requirements from experts in LDs. Methods: A set of design guidelines was formed during a 2-phase process. Phase 1 involved conducting a series of requirements-gathering interviews with 10 experts in LDs?the protocol of which emerged from the results of a separate scoping review. The interviews were subjected to a framework analysis to discern the key requirements discussed by the experts, and these were embedded within a technology probe. In phase 2, this probe was presented to a subset (n=4) of the experts during a round of usability studies, and the feedback received was used to update the requirements identified in phase 1. Results: An initial set of design requirements has been produced that may assist in the development of clinical Alternative and Augmentative Communication technologies for adults with MLDs. Factors that must be considered range from the health, physical and cognitive needs of stakeholders, to the more individual needs of users. Conclusions: The experts involved in the study were optimistic about the proposed app. They believe that such technologies can help to alleviate time constraints and promote communication by presenting information in a form understood by both practitioners and patients. UR - http://rehab.jmir.org/2019/1/e10449/ UR - http://dx.doi.org/10.2196/10449 UR - http://www.ncbi.nlm.nih.gov/pubmed/30829575 ID - info:doi/10.2196/10449 ER - TY - JOUR AU - Benyakorn, Songpoom AU - Calub, A. Catrina AU - Riley, J. Steven AU - Schneider, Andrea AU - Iosif, Ana-Maria AU - Solomon, Marjorie AU - Hessl, David AU - Schweitzer, B. Julie PY - 2018/05/25 TI - Computerized Cognitive Training in Children With Autism and Intellectual Disabilities: Feasibility and Satisfaction Study JO - JMIR Ment Health SP - e40 VL - 5 IS - 2 KW - autism KW - training KW - working memory KW - intellectual disability KW - treatment adherence KW - satisfaction N2 - Background: Researchers are increasingly interested in testing and developing computerized cognitive training interventions for individuals with autism spectrum disorder due to the limited accessibility of treatments for this disorder. Understanding the feasibility of testing cognitive interventions for this population is critical, especially for individuals with ASD who have low to moderate intellectual ability. Objective: The aim of the study was to evaluate the feasibility of computerized cognitive training as measured by attrition rate and a parent satisfaction survey. Methods: A total of 26 participants aged 8-17 years with an autism spectrum disorder diagnosis and significant intellectual impairment were enrolled (mean age 11.1 years). They were instructed to complete 25 sessions of Cogmed Working Memory Training in 5 to 6 weeks with coach assistance. Attrition rate and parent satisfaction surveys were measured after the completion of training. Results: Most participants (96%, 25/26) completed the training and indicated high satisfaction (>88%). However, among the participants who completed the training, 5 participants (19%) were unable to finish in 6 weeks, the recommended training period by Cogmed. Parents noted various positive (eg, voice-overs) and negative (eg, particular graphic and sounds associated with a stimulus) features of the game that they thought affected their child?s response. Conclusions: Children with autism spectrum disorder and intellectual impairments can successfully participate in computerized cognitive training interventions but may require additional weeks to complete the training beyond the time needed for children without intellectual impairments. The overall completion rate, with extended time to complete the training, was high. Developers of cognitive training programs for this population should take into account potential issues regarding the noise level of stimuli and characteristics of the visual graphics. UR - http://mental.jmir.org/2018/2/e40/ UR - http://dx.doi.org/10.2196/mental.9564 UR - http://www.ncbi.nlm.nih.gov/pubmed/29802090 ID - info:doi/10.2196/mental.9564 ER - TY - JOUR AU - Salgado, M. Teresa AU - Fedrigon, Alexa AU - Riccio Omichinski, Donna AU - Meade, A. Michelle AU - Farris, B. Karen PY - 2018/05/23 TI - Identifying Medication Management Smartphone App Features Suitable for Young Adults With Developmental Disabilities: Delphi Consensus Study JO - JMIR Mhealth Uhealth SP - e129 VL - 6 IS - 5 KW - developmental disabilities KW - intellectual disability KW - mobile applications KW - self-management KW - telemedicine KW - young adult N2 - Background: Smartphone apps can be a tool to facilitate independent medication management among persons with developmental disabilities. At present, multiple medication management apps exist in the market, but only 1 has been specifically designed for persons with developmental disabilities. Before initiating further app development targeting this population, input from stakeholders including persons with developmental disabilities, caregivers, and professionals regarding the most preferred features should be obtained. Objective: The aim of this study was to identify medication management app features that are suitable to promote independence in the medication management process by young adults with developmental disabilities using a Delphi consensus method. Methods: A compilation of medication management app features was performed by searching the iTunes App Store, United States, in February 2016, using the following terms: adherence, medication, medication management, medication list, and medication reminder. After identifying features within the retrieved apps, a final list of 42 features grouped into 4 modules (medication list, medication reminder, medication administration record, and additional features) was included in a questionnaire for expert consensus rating. A total of 52 experts in developmental disabilities, including persons with developmental disabilities, caregivers, and professionals, were invited to participate in a 3-round Delphi technique. The purpose was to obtain consensus on features that are preferred and suitable to promote independence in the medication management process among persons with developmental disabilities. Consensus for the first, second, and third rounds was defined as ?90%, ?80%, and ?75% agreement, respectively. Results: A total of 75 responses were received over the 3 Delphi rounds?30 in the first round, 24 in the second round, and 21 in the third round. At the end of the third round, cumulative consensus was achieved for 60% (12/20) items in the medication list module, 100% (3/3) in the medication reminder module, 67% (2/3) in the medication administration record module, and 63% (10/16) in the additional features module. In addition to the medication list, medication reminder, and medication administration record features, experts selected the following top 3 most important additional features: automatic refills through pharmacies; ability to share medication information from the app with providers; and ability to share medication information from the app with family, friends, and caregivers. The top 3 least important features included a link to an official drug information source, privacy settings and password protection, and prescription refill reminders. Conclusions: Although several mobile apps for medication management exist, few are specifically designed to support persons with developmental disabilities in the complex medication management process. Of the 42 different features assessed, 64% (27/42) achieved consensus for inclusion in a future medication management app. This study provides information on the features of a medication management app that are most important to persons with developmental disabilities, caregivers, and professionals. UR - http://mhealth.jmir.org/2018/5/e129/ UR - http://dx.doi.org/10.2196/mhealth.9527 UR - http://www.ncbi.nlm.nih.gov/pubmed/29792292 ID - info:doi/10.2196/mhealth.9527 ER - TY - JOUR AU - Cheng, Kathy Hsin-Yi AU - Chen, Li-Ying AU - Cheng, Chih-Hsiu AU - Ju, Yan-Ying AU - Chen, Chia-Ling AU - Tseng, C. Kevin PY - 2016/10/24 TI - A Multimedia Child Developmental Screening Checklist: Design and Validation JO - J Med Internet Res SP - e277 VL - 18 IS - 10 KW - child development KW - multimedia KW - screening KW - usability KW - Web-based KW - disability N2 - Background: Identifying disability early in life confers long-term benefits for children. The Taipei City Child Development Screening tool, second version (Taipei II) provides checklists for 13 child age groups from 4 months to 6 years. However, the usability of a text-based screening tool largely depends on the literacy level and logical reasoning ability of the caregivers, as well as language barriers caused by increasing numbers of immigrants. Objective: The objectives of this study were to (1) design and develop a Web-based multimedia version of the current Taipei II developmental screening tool, and (2) investigate the measurement equivalence of this multimedia version to the original paper-based version. Methods: To develop the multimedia version of Taipei II, a team of experts created illustrations, translations, and dubbing of the original checklists. The developmental screening test was administered to a total of 390 primary caregivers of children aged between 4 months and 6 years. Results: Psychometric testing revealed excellent agreement between the paper and multimedia versions of Taipei II. Good to excellent reliabilities were demonstrated for all age groups for both the cross-mode similarity (mode intraclass correlation range 0.85-0.96) and the test-retest reliability (r=.93). Regarding the usability, the mean score was 4.80 (SD 0.03), indicating that users were satisfied with their multimedia website experience. Conclusions: The multimedia tool produced essentially equivalent results to the paper-based tool. In addition, it had numerous advantages, such as it can facilitate active participation and promote early screening of target populations. ClinicalTrial: Clinicaltrials.gov NCT02359591; https://clinicaltrials.gov/ct2/show/NCT02359591 (Archived by WebCite at http://www.webcitation.org/6l21mmdNn) UR - http://www.jmir.org/2016/10/e277/ UR - http://dx.doi.org/10.2196/jmir.6249 UR - http://www.ncbi.nlm.nih.gov/pubmed/27777218 ID - info:doi/10.2196/jmir.6249 ER - TY - JOUR AU - Hall, Valerie AU - Conboy-Hill, Suzanne AU - Taylor, Dave PY - 2011/11/14 TI - Using Virtual Reality to Provide Health Care Information to People With Intellectual Disabilities: Acceptability, Usability, and Potential Utility JO - J Med Internet Res SP - e91 VL - 13 IS - 4 KW - Learning disabilities KW - intellectual disabilities KW - virtual reality KW - health information KW - participatory research KW - capacity to consent KW - presence N2 - Background: People with intellectual disabilities have poor access to health care, which may be further compromised by a lack of accessible health information. To be effective, health information must be easily understood and remembered. People with intellectual disabilities learn better from multimodal information sources, and virtual reality offers a 3-dimensional (3D) computer-generated environment that can be used for providing information and learning. To date, research into virtual reality experiences for people with intellectual disabilities has been limited to skill-based training and leisure opportunities within the young to mid age ranges. Objective: This study assessed the acceptability, usability, and potential utility of a virtual reality experience as a means of providing health care-related information to people with intellectual disabilities. We designed a prototype multimodal experience based on a hospital scenario and situated on an island in the Second Life 3D virtual world. We wanted to know how people of different ages and with varying levels of cognitive function would participate in the customized virtual environment, what they understood from being there, and what they remembered a week later. Methods: The study drew on qualitative data. We used a participatory research approach that involved working alongside people with intellectual disabilities and their supporters in a community setting. Cognitive function was assessed, using the Matrix Analogies Test and the British Picture Vocabulary Scale, to describe the sample. Participants, supported by facilitators, were video recorded accessing and engaging with the virtual environment. We assessed recall 1 week later, using a specialized interview technique. Data were downloaded into NVivo 8 and analyzed using the framework analysis technique. Results: Study participants were 20 people aged between 20 and 80 years with mild to severe intellectual disabilities. All participants were able to access the environment and voluntarily stayed there for between 23 and 57 minutes. With facilitator support, all participants moved the avatar themselves. Participants engaged with the scenario as if they were actually there, indicating cognitive presence. Some referred back to previous medical experiences, indicating the potential for experiential knowledge to become the foundation of new learning and retention of knowledge. When interviewed, all participants remembered some aspects of the environment. Conclusions: A sample of adults with intellectual disabilities of all ages, and with varying levels of cognitive function, accessed and enjoyed a virtual-world environment that drew on a health care-related scenario, and remembered aspects of it a week later. The small sample size limits generalizability of findings, but the potential shown for experiential learning to aid retention of knowledge on which consent is based appears promising. Successfully delivering health care-related information in a non-National Health Service setting indicates potential for delivery in institutional, community, or home settings, thereby widening access to the information. UR - http://www.jmir.org/2011/4/e91/ UR - http://dx.doi.org/10.2196/jmir.1917 UR - http://www.ncbi.nlm.nih.gov/pubmed/22082765 ID - info:doi/10.2196/jmir.1917 ER -