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BackgroundCerebral palsy (CP) is the most common childhood physical disability. Early and evidence-based rehabilitation is essential for improving functional outcomes in children with CP. However, rehabilitation professionals face barriers to adopting evidence-based practices (EBP)s. The objective of this project is to develop a knowledge translation (KT) strategy to support CP-EBP among pediatric rehabilitation professionals.MethodsWe follow an integrated KT approach by collaborating with clinician- and patient-partners. Partners engaged in co-design through team meetings and content review via email. The KT strategy comprises two components: (1) An electronic (e)-KT toolkit was created from summarized evidence extracted from randomized clinical trials on early rehabilitation for children with CP, and (2) a multifaceted online KT training program developed with guidance from a scoping review exploring effective KT strategies.ResultsThe e-KT toolkit summarizes twenty-two early interventions for children with or at risk for CP aged 0–5 years. Each module features an introduction, resources, parent/family section, and clinician information, including outcomes, intervention effectiveness, and evidence level. The KT training program includes three 10–15 min video-based training modules, text summaries, quizzes, and case studies. Site champions, identified as qualified rehabilitation professionals, were onboarded to support the site implementation of the training program. A champion-training booklet and 1-hour session were designed to equip them with the necessary knowledge/resources.ConclusionThe tailored, multifaceted, and co-designed KT strategy aims to be implemented in pediatric rehabilitation sites to support professional's uptake of CP-EBPs. Lessons learned from its development, including the co-development process and multifaceted nature, hold potential for broader applications in rehabilitation.

Families of individuals with neurodevelopmental disabilities or differences (NDDs) often struggle to find reliable health information on the web. NDDs encompass various conditions affecting up to 14% of children in high-income countries, and most individuals present with complex phenotypes and related conditions. It is challenging for their families to develop literacy solely by searching information on the internet. While in-person coaching can enhance care, it is only available to a minority of those with NDDs. Chatbots, or computer programs that simulate conversation, have emerged in the commercial sector as useful tools for answering questions, but their use in health care remains limited. To address this challenge, the researchers developed a chatbot named CAMI (Coaching Assistant for Medical/Health Information) that can provide information about trusted resources covering core knowledge and services relevant to families of individuals with NDDs. The chatbot was developed, in collaboration with individuals with lived experience, to provide information about trusted resources covering core knowledge and services that may be of interest. The developers used the Django framework (Django Software Foundation) for the development and used a knowledge graph to depict the key entities in NDDs and their relationships to allow the chatbot to suggest web resources that may be related to the user queries. To identify NDD domain–specific entities from user input, a combination of standard sources (the Unified Medical Language System) and other entities were used which were identified by health professionals as well as collaborators. Although most entities were identified in the text, some were not captured in the system and therefore went undetected. Nonetheless, the chatbot was able to provide resources addressing most user queries related to NDDs. The researchers found that enriching the vocabulary with synonyms and lay language terms for specific subdomains enhanced entity detection. By using a data set of numerous individuals with NDDs, the researchers developed a knowledge graph that established meaningful connections between entities, allowing the chatbot to present related symptoms, diagnoses, and resources. To the researchers’ knowledge, CAMI is the first chatbot to provide resources related to NDDs. Our work highlighted the importance of engaging end users to supplement standard generic ontologies to named entities for language recognition. It also demonstrates that complex medical and health-related information can be integrated using knowledge graphs and leveraging existing large datasets. This has multiple implications: generalizability to other health domains as well as reducing the need for experts and optimizing their input while keeping health care professionals in the loop. The researchers' work also shows how health and computer science domains need to collaborate to achieve the granularity needed to make chatbots truly useful and impactful.

Abstract Background The CHILD-BRIGHT Network, a pan-Canadian childhood disability research Network, is dedicated to patient-oriented research, where numerous stakeholders, including patient-partners, researchers, and clinicians are involved at different levels. The Network is committed to continuously improving the level of engagement and partnerships’ impact. Measuring patient engagement is therefore important in reflecting on our practices and enhancing our approaches. We aimed to measure patient engagement longitudinally and explore in greater depth the perceived benefits, barriers and facilitators, and overall satisfaction with patient engagement, from the perspectives of the different stakeholders. Methods Patient engagement was measured using online surveys. In a longitudinal study design over a 3-years period (2018–2020) the Community-Based Participatory Research (CBPR) questionnaire was used. To enrich our understanding of patient engagement in Year 3, we employed the Public and Patient Engagement Evaluation Tool (PPEET) in a cross-sectional, convergent parallel mixed-method study design. Descriptive statistics and a thematic-based approach were used for data analysis. Results The CBPR questionnaire was completed by n = 167 (61.4% response rate), n = 92 (30.2% response rate), and n = 62 (14.2% response rate) Network members in Years 1, 2, and 3, respectively. Ninety-five (n = 95, 21.8% response rate) members completed the PPEET in Year 3. CBPR findings demonstrate a stable and high satisfaction level with patient engagement over time, where 94%, 86%, and 94% of stakeholders indicated that the project is a “true partnership” in Years 1, 2, and 3, respectively. In Years 2 and 3, we noted an improvement in patient-partners’ comfort level in sharing their views and perspectives (92% and 91% vs. 74%). An increase in critical reflective trust (i.e., allowing for discussing and resolving mistakes) from Year 1 to 3 was found, both from the perspectives of patient-partners (51–65%) and researchers (48–75%). Using the PPEET, patient engagement factors (i.e., communications and supports for participation, ability to share views and perspectives) and impact were highly rated by most (80–100%) respondents. PPEET’s qualitative responses revealed several patient engagement advantages (e.g., increased projects’ relevance, enhanced knowledge translation), barriers (e.g., group homogeneity), facilitators (e.g., optimal communication strategies), and solutions to further improve patient engagement (e.g., provide clarity on goals). Conclusion Our 3-years patient engagement evaluation journey demonstrated a consistent and high level of satisfaction with patient engagement within the Network and identified advantages, barriers, facilitators, and potential solutions. Improvements were observed in members’ comfort in sharing their views and perspectives, along with an increase in critical reflective trust. These findings underscore the Network's commitment to enhancing patient engagement and provide valuable insights for continued improvement and optimization of collaborative efforts.

PurposeTo strengthen the translation of evidence to actionable policy, stakeholder engagement is necessary to synthesize, prioritize and contextualize the academic research content into accessible language. In this manuscript we describe a multi-level evidence-based stakeholder consultation process and related outcomes proposed to promote awareness of and foster cross-sectorial collaborations towards human rights-based approaches for children with disabilities.MethodsMixed-methods participatory action research done in three steps: (1) A literature review of peer-reviewed evidence on rights-based approaches in childhood disabilities; (2) Consultation with researchers in diverse fields, grassroot organizations, caregivers, and youth with disabilities; (3) A constructive dialogue with decision makers at federal and provincial levels in Canada to discuss consultations results.ResultsStakeholders value human rights approaches that can have a direct impact on practical aspects of their daily living. Organizations give high importance to adopting rights-based approaches to measure policy outcomes, while parents value service provision and youth emphasize accessibility.ConclusionThe implementation of rights-based approaches in childhood disabilities can support policy, services, and daily lives of children with disabilities and the ecosystems around them. It can also guide research priorities, and create a common language to foster collaborations across sectors and interested parties.

Abstract Background The CHILD-BRIGHT Network created a parent peer mentor (PPM) role to support other parents who were engaging as partners in the different research projects and activities of the network. We aim to describe how a PPM functioned to support parent-partners of children with disabilities in research projects within the Network. Methods In this case study, the PPM approached 50 parent-partners and scheduled a 1-on-1 initial telephone call to offer support for any issues arising. When consent was provided, the PPM recorded interactions with network parent-partners in a communication report in an Excel form. Also, verbatim transcription from one in-depth interview with the PPM was included for data analysis using qualitative description. The Guidance for Reporting Involvement of Patients and the Public (GRIPP2-SF) was used to report on involvement of patient-partners. Results A total of 55 interactions between 25 parent-partners and the PPM were documented between May 2018 and June 2021. The PPM’s support and liaison role contributed to adaptation of meeting schedules for parent-partners, amendment of the compensation guidelines, and ensuring that internal surveys and the newsletter were more accessible and engaging. The PPM also facilitated community-building by keeping parent-partners connected with researchers in the Network. Families and caregivers in the Network were comfortable sharing their experiences and emotions with the PPM who was also a parent herself, allowing researchers and the Network to learn more about parents’ experiences in partnering with them and how to improve engagement. Conclusions We highlight the important complementary role that a PPM can play in enhancing patient engagement in research by better understanding the experiences and needs of parent-partners.

Abstract Introduction Executive function deficits and adverse psychological outcomes are common in youth with congenital heart disease (CHD) or born preterm. Association white matter bundles play a critical role in higher order cognitive and emotional functions and alterations to their microstructural organization may result in adverse neuropsychological functioning. This study aimed to examine the relationship of myelination and axon density and orientation alterations within association bundles with executive functioning, psychosocial well‐being, and resilience in youth with CHD or born preterm. Methods Youth aged 16 to 26 years born with complex CHD or preterm at ≤33 weeks of gestational age and healthy controls completed a brain MRI and self‐report assessments of executive functioning, psychosocial well‐being, and resilience. Multicomponent driven equilibrium single‐pulse observation of T1 and T2 and neurite orientation dispersion and density imaging were used to calculate average myelin water fraction (MWF), neurite density index (NDI), and orientation dispersion index values for eight bilateral association bundles. The relationships of bundle‐average metrics with neuropsychological outcomes were explored with linear regression and mediation analyses. Results In the CHD group, lower MWF in several bundles was associated with poorer working memory and behavioral self‐monitoring and mediated self‐monitoring deficits relative to controls. In the preterm group, lower NDI in several bundles was associated with poorer emotional control and lower MWF in the left superior longitudinal fasciculus III mediated planning/organizing deficits relative to controls. No significant relationships were observed for psychosocial well‐being or resilience. Conclusion The findings of this study suggest that microstructural alterations to association bundles, including lower myelination and axon density, have different relationships with executive functioning in youth with CHD and youth born preterm. Future studies should aim to characterize other neurobiological, social, and environmental influences that may interact with white matter microstructure and neuropsychological functioning in these at‐risk individuals.

Plain English summary This qualitative research paper seeks to understand patient engagement in large teams and networks. Patient engagement is the meaningful and active partnership of patients on a research team. We aim to understand the factors needed in a research environment that consider and include patients. Patient engagement was measured through interviews with 25 CHILD-BRIGHT Network members, either patient-partners or researchers, about their experiences. In this study, patient-partners were the parents of youth affected by brain-based disorders. We identified factors that made it easier or more difficult for patient-partners to engage with the projects and the network. Additionally, we looked at the impacts of patient engagement as observed by the interviewees. We found that at the project level and network level, the factors that helped engagement and made it difficult to engage were similar for both patient-partners and researchers. At the project level for example, open communication and factors specific to patient-partners (e.g., motivation to contribute) were identified by patient-partners and researchers as helping engagement. Maintaining long-term engagement and ensuring meaningful collaboration were identified as factors that make engagement difficult. At the network level, both patient-partners and researchers noted that communication (e.g., regular follow-cup) made it easier to engage while time constraints and asking too much from patient-partners made engagement more difficult. Finally, interviewees shared that patient engagement impacted patient-partners, researchers, and the research being conducted. Patient engagement helped ensure that the research reflected patient-partners’ priorities, allowed collaboration, and provided patient-partners and researchers with learning opportunities. The results of our research have allowed us to identify strategies that can be used to create more meaningful engagement within large research teams.

Introduction Children with cerebral palsy (CP) participate less in physical activities and have increased sedentary behaviour compared with typically developing peers. Participate CP is a participation-focused therapy intervention for children with CP with demonstrated efficacy in a phase II randomised controlled trial (RCT) to increase perceived performance of physical activity participation goals. This study will test the effectiveness of Participate CP in a multisite phase III RCT.Methods and analysis One hundred children with CP, aged 8–14 years, classified Gross Motor Function Classification System levels I–IV will be randomised to either (1) receive Participate CP once/week for 1 hour for 12 weeks, or (2) waitlist control, usual care group. The waitlist group will then receive Participate CP following the 26-week retention time point. Outcomes will be assessed at baseline, 12 weeks and then 26 weeks post baseline. The primary outcomes are (1) self-reported participation goal performance on the Canadian Occupational Performance Measure at 12 weeks and (2) daily time in moderate-to-vigorous physical activity. Secondary outcomes include home and community participation frequency, involvement and environmental supportiveness, contextual barriers to participation, quality of life, intrinsic motivation for physical activities, child perception of an autonomy-supportive climate for physical activities and physical literacy at 12 and 26 weeks post study entry.Ethics and dissemination The Children’s Health Queensland Hospital and Health Service, The University of Queensland and the New Zealand Health and Disability Ethics Committees have approved this study. Findings will be disseminated in peer-reviewed journals and conference presentations.Trial registration number ACTRN12618000206224.

Abstract Background Participation in the community is a fundamental human right for children with disabilities and is a key component of their health and development. Inclusive communities can enable children with disabilities to participate fully and effectively. The Child Community Health Inclusion Index (CHILD-CHII) is a comprehensive assessment tool developed to examine the extent to which community environments foster healthy, active living for children with disabilities. Objectives To assess the feasibility of applying the CHILD-CHII measurement tool across different community settings. Methods Participants recruited through maximal representation, and purposeful sampling from four community sectors (Health, Education, Public Spaces, Community Organizations) applied the tool on their affiliated community facility. Feasibility was examined by assessing length, difficulty, clarity, and value for measuring inclusion; each rated on a 5-point Likert scale. Participants provided comments for each indicator through the questionnaire and a follow-up interview. Results Of the 12 participants, 92% indicated that the tool was ‘long’ or ‘much too long’; 66% indicated that the tool was clear; 58% indicated that the tool was ‘valuable’ or ‘very valuable’. No clear consensus was obtained for the level of difficulty. Participants provided comments for each indicator. Conclusion Although the length of the tool was regarded as long, it was seen to be comprehensive and valuable for stakeholders in addressing the inclusion of children with disabilities in the community. The perceived value and the evaluators’ knowledge, familiarity, and access to information can facilitate use of the CHILD-CHII. Further refinement and psychometric testing will be conducted.

Abstract Background Children’s exposure to toxic stress (e.g., parental depression, violence, poverty) predicts developmental and physical health problems resulting in health care system burden. Supporting parents to develop parenting skills can buffer the effects of toxic stress, leading to healthier outcomes for those children. Parenting interventions that focus on promoting parental reflective function (RF), i.e., parents’ capacity for insight into their child’s and their own thoughts, feelings, and mental states, may understand help reduce societal health inequities stemming from childhood stress exposures. The Attachment and Child Health (ATTACHTM) program has been implemented and tested in seven rapid-cycling pilot studies (n = 64) and found to significantly improve parents’ RF in the domains of attachment, parenting quality, immune function, and children’s cognitive and motor development. The purpose of the study is to conduct an effectiveness-implementation hybrid (EIH) Type II study of ATTACHTM to assess its impacts in naturalistic, real-world settings delivered by community agencies rather than researchers under more controlled conditions. Methods The study is comprised of a quantitative pre/post-test quasi-experimental evaluation of the ATTACHTM program, and a qualitative examination of implementation feasibility using thematic analysis via Normalization Process Theory (NPT). We will work with 100 families and their children (birth to 36-months-old). Study outcomes include: the Parent Child Interaction Teaching Scale to assess parent-child interaction; the Parental Reflective Function and Reflective Function Questionnaires to assess RF; and the Ages and Stages Questionnaire – 3rd edition to examine child development, all administered pre-, post-, and 3-month-delayed post-assessment. Blood samples will be collected pre- and post- assessment to assess immune biomarkers. Further, we will conduct one-on-one interviews with study participants, health and social service providers, and administrators (total n = 60) from each collaborating agency, using NPT to explore perceptions and experiences of intervention uptake, the fidelity assessment tool and e-learning training as well as the benefits, barriers, and challenges to ATTACHTM implementation. Discussion The proposed study will assess effectiveness and implementation to help understand the delivery of ATTACHTM in community agencies. Trial registration Name of registry: https://clinicaltrials.gov/. Registration number: NCT04853888 . Date of registration: April 22, 2021.

BackgroundThe participation of children with disabilities in leisure activities is a key determinant of their physical and mental health. The COVID-19 pandemic has limited participation in leisure activities for all children, particularly those with disabilities. As a result, children with disabilities may be less active while feeling more isolated and stressed. Web-based communities and activities have become increasingly important. Understanding how web-based activities include or exclude children with disabilities can contribute to the development of inclusive communities that may support participation after the pandemic. ObjectiveThis study aimed to identify factors that may facilitate or prevent the participation of children with disabilities in web-based leisure activities. MethodsWe adopted a qualitative descriptive interpretative methodology and conducted interviews with 2 groups of participants: service providers offering inclusive web-based leisure activities and parents of children with disabilities who have engaged in web-based leisure activities during the COVID-19 pandemic. A semistructured interview format was created based on the Theoretical Domains Framework. The questions focused on the description of the web-based activities offered by the service provider (eg, age range, frequency, cost, target population, and type of activity offered) and any adaptations to make the web-based activity accessible to children and youth with disabilities, and their perceptions and beliefs about what supported or deterred participation in the activities. ResultsA total of 17 participants described their experiences in participating in and creating web-based leisure programs and the factors preventing or facilitating children’s participation in web-based activities. Environment and context factors included accommodations, the format of activities and the web-based setting, stakeholder involvement, and materials and resources available. Activities that had flexible schedules, both recorded and live options for joining, and that provided clear instructions and information were perceived as more accessible. Beliefs involved the characteristics of the child and the family environment, as well as the characteristics of the organizations providing the activity. Activity facilitators who were familiar with the web-based environment and knew the specific characteristics of the child facilitated their participation. Engagement in community champions and respect for children’s individual preferences were perceived as positive. Access to technology, funding, and caregivers’ ability to facilitate child engagement are crucial factors that must be considered when offering web-based programs. ConclusionsWeb-based environments offer an accessible and safe option for leisure participation when public health conditions prevent children with disabilities from participating in in-person activities. However, to make web-based activities accessible to children with a variety of disabilities, there needs to be a clear plan toward universal web-based accessibility that accounts for individual needs and collective approaches to web-based leisure. Future work should consider developing and testing guidelines for web-based accessibility, equity, public policy, and programming considerations in offering these activities for all children.

Background: Developmental follow-up is central to the timely identification of delays in at-risk children. Throughout Canada, data are currently lacking on the follow-up of children with congenital heart disease (CHD) after open-heart surgery. The objective of this study was to describe current Canadian developmental follow-up practices and to explore barriers to optimal follow-up. Methods: A cross-sectional study was implemented with health professionals involved with the developmental follow-up of children with CHD in the 8 specialized hospitals that perform pediatric open-heart surgery in Canada. A questionnaire collected descriptive information about the setting and current follow-up practices. In addition, an interview was conducted to explore what would be considered optimal developmental follow-up in Canada and identify potential barriers. Results: Four of the 8 tertiary care centres had a systematic developmental follow-up program that included screening and formal evaluation. These programs were only accessible to a subset of children with CHD identified to be at higher risk. Participants described current practices as suboptimal and aimed to develop a more systematic developmental follow-up program or expand an existing one. Participants emphasized the lack of human resources, financial supports, and limited dedicated time as major barriers to offering optimal follow-up care. Conclusions: Current follow-up practices in Canada are considered suboptimal by health care specialists involved in treating children with CHD. These practices may fail to promptly identify children and adolescents with CHD who have developmental challenges. It is essential that we develop national recommendations to optimize the developmental follow-up practices in Canada for this high-risk population. Résumé: Contexte: Le suivi développemental est essentiel afin d’identifier rapidement les retards chez les enfants à risque. Il n’existe actuellement pas de données sur le suivi des enfants atteints d’une cardiopathie congénitale ayant nécessité une intervention chirurgicale à cœur ouvert. L’objectif de cette étude consistait à décrire les pratiques actuelles de suivi développemental et à explorer les obstacles à un suivi optimal au Canada. Méthodologie: Une étude transversale a été menée auprès de professionnels de la santé assurant le suivi du développement d’enfants atteints de cardiopathie congénitale dans huit hôpitaux spécialisés qui pratiquent des chirurgies à cœur ouvert au Canada. Un questionnaire a permis de recueillir des renseignements descriptifs sur les établissements et les pratiques actuelles de suivi. De plus, une entrevue a été menée pour explorer ce qui pourrait être considéré comme un suivi optimal du développement au Canada et cerner les obstacles actuels. Résultats: Quatre des huit centres de soins tertiaires disposaient d’un programme de suivi systématique du développement qui comprenait un dépistage et une évaluation formelle. Ces programmes n’étaient accessibles qu’à un sous-groupe d’enfants atteints d’une cardiopathie congénitale, identifiés comme étant à risque élevé de retard de développement. Les participants ont décrit les pratiques actuelles comme sous-optimales et souhaitaient mettre en place un programme de suivi développemental plus systématique ou à élargir un programme existant. Les participants ont souligné le manque de ressources humaines et financières ainsi que le peu de temps qui peut être consacré au suivi comme étant les principaux obstacles pour offrir un suivi optimal. Conclusions: Les professionnels de la santé œuvrant dans le traitement des enfants atteints de cardiopathie congénitale considèrent que les pratiques actuelles de suivi au Canada sont sous-optimales. Ces pratiques peuvent ne pas permettre d’identifier rapidement les enfants et les adolescents atteints de cardiopathie congénitale qui présentent des retards de développement. Il est essentiel que nous élaborions des recommandations nationales pour optimiser les pratiques de suivi développemental au Canada pour cette population à risque élevé.

BackgroundTo promote and ensure coaches' fidelity in delivering an online health coaching program to parents of children with suspected developmental delay, we developed and implemented a novel coaching fidelity rating tool, CO-FIDEL (COaches Fidelity in Intervention DELivery). We aimed to (1) Demonstrate CO-FIDEL's feasibility in evaluating coaches' fidelity and its change over time; and (2) Explore coaches' satisfaction with and usefulness of the tool.MethodsIn an observational study design, coaches (n = 4) were assessed using the CO-FIDEL following each coaching session (n = 13–14 sessions/parent-participant) during the pilot phase of a large randomized clinical trial involving eleven (n = 11) parent-participants. Outcome measures included subsections' fidelity measures, overall coaching fidelity, and coaching fidelity changes over time analyzed using descriptive and non-parametric statistics. In addition, using a four-point Likert Scale and open-ended questions, coaches were surveyed on their satisfaction and preference levels, as well as facilitators, barriers, and impacts related to the use of CO-FIDEL. These were analyzed using descriptive statistics and content analysis.ResultsOne hundred and thirty-nine (n = 139) coaching sessions were evaluated with the CO-FIDEL. On average, overall fidelity was high (88.0 ± 6.3 to 99.5 ± 0.8%). Four coaching sessions were needed to achieve and maintain a ≥ 85.0% fidelity in all four sections of the tool. Two coaches showed significant improvements in their coaching skills over time in some of the CO-FIDEL sections (Coach B/Section 1/between parent-participant B1 and B3: 89.9 ± 4.6 vs. 98.5 ± 2.6, Z = −2.74, p = 0.00596; Coach C/Section 4/between parent-participant C1 and C2: 82.4 ± 7.5 vs. 89.1 ± 4.1, Z = −2.66; p = 0.00758), and in overall fidelity (Coach C, between parent-participant C1 and C2: 88.67 ± 6.32 vs. 94.53 ± 1.23, Z = −2.66; p = 0. 00758). Coaches mainly reported moderate-high satisfaction with and usefulness of the tool, and pointed out areas of improvement (e.g., ceiling effect, missing elements).ConclusionsA new tool ascertaining coaches' fidelity was developed, applied, and shown to be feasible. Future research should address the identified challenges and examine the psychometric properties of the CO-FIDEL.

BackgroundChatbots have been increasingly considered for applications in the health care field. However, it remains unclear how a chatbot can assist users with complex health needs, such as parents of children with neurodevelopmental disorders (NDDs) who need ongoing support. Often, this population must deal with complex and overwhelming health information, which can make parents less likely to use a software that may be very helpful. An approach to enhance user engagement is incorporating game elements in nongame contexts, known as gamification. Gamification needs to be tailored to users; however, there has been no previous assessment of gamification use in chatbots for NDDs. ObjectiveWe sought to examine how gamification elements are perceived and whether their implementation in chatbots will be well received among parents of children with NDDs. We have discussed some elements in detail as the initial step of the project. MethodsWe performed a narrative literature review of gamification elements, specifically those used in health and education. Among the elements identified in the literature, our health and social science experts in NDDs prioritized five elements for in-depth discussion: goal setting, customization, rewards, social networking, and unlockable content. We used a qualitative approach, which included focus groups and interviews with parents of children with NDDs (N=21), to assess the acceptability of the potential implementation of these elements in an NDD-focused chatbot. Parents were asked about their opinions on the 5 elements and to rate them. Video and audio recordings were transcribed and summarized for emerging themes, using deductive and inductive thematic approaches. ResultsFrom the responses obtained from 21 participants, we identified three main themes: parents of children with NDDs were familiar with and had positive experiences with gamification; a specific element (goal setting) was important to all parents, whereas others (customization, rewards, and unlockable content) received mixed opinions; and the social networking element received positive feedback, but concerns about information accuracy were raised. ConclusionsWe showed for the first time that parents of children with NDDs support gamification use in a chatbot for NDDs. Our study illustrates the need for a user-centered design in the medical domain and provides a foundation for researchers interested in developing chatbots for populations that are medically vulnerable. Future studies exploring wide range of gamification elements with large number of potential users are needed to understand the impact of gamification elements in enhancing knowledge mobilization.

BackgroundRapid advances in technologies over the past 10 years have enabled large-scale biomedical and psychosocial rehabilitation research to improve the function and social integration of persons with physical impairments across the lifespan. The Biomedical Research and Informatics Living Laboratory for Innovative Advances of New Technologies (BRILLIANT) in community mobility rehabilitation aims to generate evidence-based research to improve rehabilitation for individuals with acquired brain injury (ABI). ObjectiveThis study aims to (1) identify the factors limiting or enhancing mobility in real-world community environments (public spaces, including the mall, home, and outdoors) and understand their complex interplay in individuals of all ages with ABI and (2) customize community environment mobility training by identifying, on a continuous basis, the specific rehabilitation strategies and interventions that patient subgroups benefit from most. Here, we present the research and technology plan for the BRILLIANT initiative. MethodsA cohort of individuals, adults and children, with ABI (N=1500) will be recruited. Patients will be recruited from the acute care and rehabilitation partner centers within 4 health regions (living labs) and followed throughout the continuum of rehabilitation. Participants will also be recruited from the community. Biomedical, clinician-reported, patient-reported, and brain imaging data will be collected. Theme 1 will implement and evaluate the feasibility of collecting data across BRILLIANT living labs and conduct predictive analyses and artificial intelligence (AI) to identify mobility subgroups. Theme 2 will implement, evaluate, and identify community mobility interventions that optimize outcomes for mobility subgroups of patients with ABI. ResultsThe biomedical infrastructure and equipment have been established across the living labs, and development of the clinician- and patient-reported outcome digital solutions is underway. Recruitment is expected to begin in May 2022. ConclusionsThe program will develop and deploy a comprehensive clinical and community-based mobility-monitoring system to evaluate the factors that result in poor mobility, and develop personalized mobility interventions that are optimized for specific patient subgroups. Technology solutions will be designed to support clinicians and patients to deliver cost-effective care and the right intervention to the right person at the right time to optimize long-term functional potential and meaningful participation in the community. International Registered Report Identifier (IRRID)PRR1-10.2196/12506

Abstract Background Patient and public engagement (PPE) in research is growing internationally, and with it, the interest for its evaluation. In Canada, the Strategy for Patient-Oriented Research has generated national momentum and opportunities for greater PPE in research and health-system transformation. As is the case with most countries, the Canadian research community lacks a common evaluation framework for PPE, thus limiting our capacity to ensure integrity between principles and practices, learn across projects, identify common areas for improvement, and assess the impacts of engagement. Objective This project aims to build a national adaptable framework for the evaluation of PPE in research, by: 1. Building consensus on common evaluation criteria and indicators for PPE in research; 2. Defining recommendations to implement and adapt the framework to specific populations. Methods Using a collaborative action-research approach, a national coalition of patient-oriented research leaders, (patient and community partners, engagement practitioners, researchers and health system leaders) will co-design the evaluation framework. We will develop core evaluation domains of the logic model by conducting a series of virtual consensus meetings using a nominal group technique with 50 patient partners and engagement practitioners, identified through 18 national research organizations. We will then conduct two Delphi rounds to prioritize process and impact indicators with 200 participants purposely recruited to include respondents from seldom-heard groups. Six expert working groups will define recommendations to implement and adapt the framework to research with specific populations, including Indigenous communities, immigrants, people with intellectual and physical disabilities, caregivers, and people with low literacy. Each step of framework development will be guided by an equity, diversity and inclusion approach in an effort to ensure that the participants engaged, the content produced, and the adaptation strategies proposed are relevant to diverse PPE. Discussion The potential contributions of this project are threefold: 1) support a national learning environment for engagement by offering a common blueprint for collaborative evaluation to the Canadian research community; 2) inform the international research community on potential (virtual) methodologies to build national consensus on common engagement evaluation frameworks; and 3) illustrate a shared attempt to engage patients and researchers in a strategic national initiative to strengthen evaluation capacity for PPE.

The COVID-19 pandemic has impacted the lives and well-being of all people globally, with consequences being observed across all domains from physical and mental health, to education and employment outcomes, to access to community supports and services. However, the disproportionate impact of the COVID-19 pandemic and its associated public health restrictions on individuals with intellectual and developmental disabilities (IDD) has largely been overlooked. Not only do people with IDD have a greater risk of severe complications and death from the virus as shown in large-scale studies, but they also face significant short- and long-term consequences of COVID-related public health measures on their mental health and well-being. At a time when this vulnerable population is already feeling undervalued, ignored, and forgotten, it is imperative that the risks facing adults and children with IDD—as well as their families and caregivers—are recognized, valued, and addressed through a disability-inclusive approach to Canada’s pandemic policy response planning. This requires both a mainstreaming of disability inclusion into all COVID-19 response and recovery policies as well as disability-specific policies to address the unique barriers and challenges encountered by people with IDD during the pandemic. The recommendations in this policy briefing aim to achieve a more inclusive, accessible, and sustainable Canada for people with IDD both during and after the pandemic—an approach that will result in benefits for all of society.

BackgroundParticipation in leisure activities is essential for child development and a human right as per the United Nations Convention on the Rights of the Child. Children with disabilities face several restrictions when participating in leisure activities as compared to same age peers without disabilities. Access to information about accessible, inclusive leisure activities is one of the barriers limiting participation, and one potential health promotion strategy is to provide access to information to increase participation. The Jooay App is a mobile app listing such activities in Canada and Australia. With the COVID-19 global pandemic and subsequent public health measures, most community-based facilities providing the activities listed on Jooay were closed. The app therefore started listing online activities offered with the expectation of continuing to provide information for families and understanding the extent to which users relied on the mobile app as a tool to identify new safe leisure opportunities. ObjectiveThis study aims to describe the engagement of the Jooay app before and during COVID-19, and to estimate the extent to which the listing of online activities was related to the engagement of the Jooay app. MethodsWe conducted a retrospective study comparing Jooay app use between March 2020 and February 2021 to the engagement between March 2019 and February 2020 by Jooay users. Spearman rank correlations were carried out to identify associations between the activities listed and the users’ engagement from May 2020 to February 2021. ResultsActive engagement with the Jooay app from March 2020 to February 2021 dropped by an average of 135 engagements (64.2%) compared to engagements in 2019-2020. The largest monthly drop in engagement was observed in May 2020 by 239 engagements (88.8%). There was a strong positive correlation between the number of active users and the number of online activities listed on the app (rs=0.900). ConclusionsThe engagement with the Jooay App presented an expected decrease during the first wave of the COVID-19 pandemic. The addition of online adapted leisure activities to the app’s listings during the pandemic increased app use. Access to information about inclusive activities is a barrier for children with disabilities to engage in leisure. Mobile health solutions can be responsive to contextual factors and consider the social determinants of health such as socioeconomic and public health emergency issues that can impact the participation of vulnerable populations such as children with disabilities and help eliminate barriers to participation. The provision of online leisure opportunities during the pandemic could facilitate participation in these activities during the pandemic and beyond, which is essential and beneficial for the physical and mental well-being of children with disabilities and their families.

BackgroundThe gap between research and its practical application in community settings limits its impact on public health. Closing this gap has the potential to improve the well-being of underserved groups, such as children with disabilities. Mobile health has the potential to improve access to community resources and support for underserved populations, thereby encouraging improved health behaviors. ObjectiveIn this feasibility pilot study, we describe the development of the mobile app Jooay. Jooay was developed in partnership with stakeholders to facilitate access to leisure and physical activity community programs for children and youth with disabilities. We also reflect on the lessons learned throughout the implementation process that are relevant for improving the health behaviors of children with disabilities. MethodsWe used a participatory action research approach to develop the app. We also administered a survey to current Jooay users and analyzed various app usage indicators to explore use patterns, user feedback, and preferences. Finally, we critically appraised the implementation process through a best practices for implementation research framework. ResultsWe developed a product that responds to users’ identified need to find information and follows accessibility and user-centered design standards. The analysis of usage data revealed that access to the Jooay app is concentrated in urban areas. Perceptions, attitudes, and information needs varied according to the type of user. The use of the mobile app changed over time, and usage decreased after the app was downloaded, indicating a need for the sustained engagement of app users. Users found value in the ability to identify activities that they would not otherwise know about. However, app use alone was not sufficient to improve participation. Although the app was developed based on users’ active input in multiple iterations, we encountered challenges with survey recruitment and attrition, suggesting the need for more seamless and engaging means for collecting data within this population. ConclusionsInteractions between users and the app can sustain user engagement and behavior change. We will improve the app’s next iterations by using the information gained from this study to conduct a larger study to assess the relationship among social and material deprivation, urban design, and access to inclusive and adaptive leisure programs. This study will inform the improvement of app listings to improve the use of Jooay by different user groups and promote health through mobile apps for marginalized groups.

Background: White matter alterations have previously been demonstrated in adolescents born with congenital heart disease (CHD) using diffusion tensor imaging (DTI). However, due to the non-specific nature of DTI metrics, it is difficult to interpret these findings in terms of their microstructural implications. This study investigated the use of neurite orientation dispersion and density imaging (NODDI), which involves the acquisition of advanced multiple b-value data over two shells and provides proxy measures of apparent axon density and orientation dispersion within white matter, as a complement to classic DTI measures. Study design: Youth aged 16 to 24 years born with complex CHD and healthy peers underwent brain magnetic resonance imaging. White matter tract volumes and tract-average values of DTI and NODDI metrics were compared between groups. Tract-average DTI and NODDI results were spatially confirmed using tract-based spatial statistics. Results: There were widespread regions of lower tract-average neurite density index (NDI) in the CHD group as compared to the control group, particularly within long association tracts and in regions of the corpus callosum, accompanied by smaller white matter tract volumes and isolated clusters of lower fractional anisotropy (FA). There were no significant differences in orientation dispersion index (ODI) between groups. Conclusion: Lower apparent density of axonal packing, but not altered axonal orientation, is a key microstructural factor in the white matter abnormalities observed in youth born with CHD. These impairments in axonal packing may be an enduring consequence of early life brain injury and dysmaturation and may explain some of the long-term neuropsychological difficulties experienced by this at-risk group.

Background: In preschool-aged children with, or at elevated risk for, developmental disabilities, challenges and needs arise from vulnerabilities linked to critical and newly emerging cognitive, speech, motor, behavioral, and social skills. For families, this can be a stressful period as they witness the gradual unfolding of their child's differences and await to receive care. Nationally and internationally, service delivery models during this critical period are not standardized nor are they nimble or sufficient enough, leading to long wait times, service gaps and duplications. Given these struggles, there is a need to examine whether “health coaching”, a structured educational program that is deliverable by different and more accessible means, can be effective in empowering families, by delivering information, providing social supports, and decreasing the demands on the overwhelmed health and developmental services. The primary objective is to evaluate the feasibility and the effectiveness of a coaching intervention (in comparison to usual and locally available care), for parents of children with emerging developmental delays.Method/Design: A multi-centered pragmatic randomized controlled trial design will be used. Families will be recruited from a representative sample of those awaiting publicly-funded regional child health services for children with developmental delays in four Canadian provinces. The target sample size is 392 families with children aged 1.5 to 4.5 years at recruitment date. Families will be randomly assigned to receive either the BRIGHT Coaching intervention (coach supported, hardcopy and online self-managed educational resources: 14 sessions, 2 sessions every 4 weeks for 6–9 months) or usual care that is locally available. In addition to the feasibility and acceptability measures, outcomes related to family empowerment, parental satisfaction and efficacy with caregiver competency will be evaluated at baseline, post-treatment (8 months), and follow-up (12 months).Discussion: This manuscript presents the background information, design, description of the interventions and of the protocol for the randomized controlled trial on the effectiveness of BRIGHT Coaching intervention for families of children with emerging developmental delays.Trial Registration:ClinicalTrials.gov, U.S. National Library of Medicine, National Institutes of Health #NCT03880383, 03/15/2019. Retrospectively registered.

Background: Developmental and behavioral issues often limit the participation of children with neurodevelopmental disabilities (NDD) in community-based activities with their peers, which decreases opportunities for their social learning and development. Parents of children with NDD seek out programs that address physical and psychosocial development. Several studies already support the positive effects for the child to attend physical activity programs (PAPs). However, these studies are highly prone to biases and Hawthorne effect. In the planning stage of a large prospective study to assess the effectiveness of PAPs we reviewed the records of children who participated in a gymnastic-based program, the Empowering Steps Movement Therapy (ESMT). Besides generating useful data for developing the prospective study we thought these data reflect the rate of changes in context of normal practice in a naturalistic environment; therefore protected from Hawthorne effect and other biases.Design: This is a historical cohort: the files of 67 children with NDD were examined across a 2-year period (Jan 2011 to Jan 2013). As part of standard practice, the ESMT therapists document changes in motor function every 6 months, using the ESMT's proprietary motor scale. Parents also completed a parental questionnaire in June 2011 regarding their perceptions of changes in their child's physical and psychosocial function, as well as family functioning since their child started the program.Results: Linear Mixed Effects Model clearly identified three groups according to changes in motor function: the ones with rapid changes (mostly functional children with autism spectrum disorder: n = 13), the ones with moderate changes (different types of NDD diagnoses: n = 41) and the ones that did not change or even decreased motor skills over the follow-up (children with complex diseases or uncontrolled epilepsy despite treatment: n = 13). Parental questionnaires (n = 39) reported improvement in most of the children's physical and psychosocial abilities; they also indicated improvement in some of the family parameters. There was no association between the changes in children's motor functions and parents' responses to the questionnaire.Conclusion: Despite limitations due to the retrospective nature of the study, the absence of a control group and the absence of validated measurement tools, the observed positive effects of attending movement therapy center on motor performance and psychosocial development confirm in a naturalistic environment what has been shown in context of clinical trials or quasi-experimental studies. These results are not conclusive. They warrant further, rigorous investigation using validated instruments, independent assessors, and control groups.

The aim of this systematic review is to describe participation in social and physical leisure activities among children and adolescents with JIA, as well as identify potential determinants of leisure participation.Electronic databases were systematically searched for articles published up until June 2013 pertaining to participation in leisure activities among youth with JIA and other rheumatic diseases. Studies were included if they measured involvement in either social or physical leisure activities. Selection and quality appraisal of articles were completed independently by two authors.Eight hundred and ninety-three articles were found through electronic and reference search. One hundred and nine full articles were reviewed to assess for eligibility. Twelve articles met inclusion criteria and findings were reviewed. Most focused on describing participation in physical rather than social activities. Results suggest that youth with JIA participated less in both social and physical leisure activities as compared to healthy peers, and those with JIA did not meet national recommendations for physical activity. Potential determinants of leisure participation were socio-demographic (age, sex), anthropometric (height, weight) and disease-related (JIA subtype, disease duration, pain, number of swollen or painful joints, stiffness, fatigue, well-being) factors.Characterization of leisure activity remains limited and mostly focused on physical activity in JIA. Assessment of more comprehensive outcome measures is warranted to obtain a better description of leisure in this population. Evidence of the influence of contextual factors as potential determinants of involvement in leisure among children with pediatric rheumatologic diseases is needed.

The objective of this study was to examine the association between leisure participation and quality of life (QoL) in school-age children with cerebral palsy (CP). Leisure participation was assessed using the Children’s Assessment of Participation and Enjoyment (CAPE) and QoL using the Pediatric Quality of Life Inventory (PedsQL). Pearson correlation coefficients were calculated to examine the association between CAPE and PedsQL scores, and a multiple linear regression model was used to estimate QoL predictors. Sixty-three children (mean age 9.7±2.1 years; 39 male) in GMFCS levels I–V were included. Intensity of participation in active-physical activities was significantly correlated with both physical (r=0.34, P=0.007) and psychosocial well-being (r=0.31, P=0.01). Intensity and diversity of participation in skill-based activities were negatively correlated with physical well-being (r=−0.39, P=0.001, and r=−0.41, P=0.001, resp.). Diversity and intensity of participation accounted for 32% (P=0.002) of the variance for physical well-being and 48% (P

Introduction: Participation in leisure activities is beneficial for children's health and development, including those living with Autism Spectrum Disorder (ASD). Available syntheses of knowledge about participation have focused primarily on children with physical disabilities; however, little attention is directed to children with ASD. The purpose of this study was therefore to synthesize research evidence regarding the patterns and determinants of leisure participation in this population. Methods: A scoping review of peer-reviewed studies published between 2000 and 2013 was performed. Two reviewers independently selected studies based on a systematic procedure. Inclusion criteria for studies were participants with ASD, aged 5-17 years, and description of participation in leisure activities outside of school. Data were organized and synthesized based on domains of the International Classification of Functioning, Disability and Health (ICF): Body Functions, Activity Limitations, and Environmental factors. Results: Sixteen articles (out of 920) met the inclusion criteria and majority of those were descriptive in nature (69 %), whereas information about the factors that affect participation was reported in only 31 %. Overall, children with ASD participate in fewer leisure activities, mostly in the home setting, either with adults or on their own. Factors identified as associated with participation involved family support and social attitudes (environmental factors), sensitivity and behavioral challenges (body functions), and communication and interpersonal relationships problems (activity limitations). Discussion: Knowledge derived from this review provides preliminary understanding of and justifies greater attention towards the concept of participation in this population. Further research directions are suggested to address the identified gaps in the literature.