Gamification in Mobile Apps for Children With Disabilities: Scoping Review.

BACKGROUND: Children with disabilities face numerous challenges in accessing health services. Mobile health is an emerging field that could significantly reduce health inequities by providing more accessible services. Many mobile apps incorporate gamification elements such as feedback, points, and stories to increase engagement and motivation; however, little is known about how gamification has been incorporated in mobile apps for children with disabilities. OBJECTIVE: This scoping review aims to identify and synthesize the existing research evidence on the use of gamification in mobile apps for children with disabilities. Specifically, the objectives were to (1) identify the categories of these mobile apps (eg, treatment and educational) (2), describe the health-related outcomes they target, (3) assess the types and levels of gamification elements used within these apps, and (4) determine the reasons for incorporating gamification elements into mobile apps. METHODS: We searched MEDLINE, PsycINFO, CINAHL, Embase, the ACM Digital Library, and IEEE Xplore databases to identify papers published between 2008 and 2023. Original empirical research studies reporting on gamified mobile apps for children with disabilities that implemented at least 1 gamification strategy or tactic were included. Studies investigating serious games or full-fledged games were excluded. RESULTS: A total of 38 studies reporting on 32 unique gamified mobile apps were included. Findings showed that gamified apps focus on communication skills and oral health in children with autism spectrum disorder while also addressing self-management and academic skills for other disability groups. Gamified mobile apps have demonstrated potential benefits across different populations and conditions; however, there were mixed results regarding their impact. The gamification strategies included fun and playfulness (23/32, 72%), feedback on performance (17/32, 53%), and reinforcement (17/32, 53%) in more than half of apps, whereas social connectivity was used as a gamification strategy in only 4 (12%) mobile apps. There were 2 main reasons for integrating gamification elements into mobile apps described in 16 (42%) studies: increasing user engagement and motivation and enhancing intervention effects. CONCLUSIONS: This scoping review offers researchers a comprehensive review of the gamification elements currently used in mobile apps for the purposes of treatment, education, symptom management, and assessment for children with disabilities. In addition, it indicates that studies on certain disability groups and examinations of health-related outcomes have been neglected, highlighting the need for further investigations in these areas. Furthermore, research is needed to investigate the effectiveness of mobile-based gamification elements on health and health behavior outcomes, as well as the healthy development of children with disabilities.

Evidence-based early rehabilitation for children with cerebral palsy: co-development of a multifaceted knowledge translation strategy for rehabilitation professionals.

Background: Cerebral 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. Methods: We 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. Results: The 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. Conclusion: The 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.

Developing a Chatbot to Support Individuals With Neurodevelopmental Disorders: Tutorial.

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.

Knowledge translation strategies used to promote evidence-based interventions for children with cerebral palsy: a scoping review.

BACKGROUND: Cerebral palsy (CP) is the most common childhood physical disability, imposing substantial costs on individuals and society. Early interventions that promote brain optimization and reorganization are vital for children with CP. Integrating early evidence-based practice (EBP) remains challenging but enhances functional outcomes. METHODS: Following a scoping review methodology, databases were searched to identify studies examining the impact of knowledge translation (KT) strategies for pediatric CP interventions. Extraction included study characteristics, methodology, KT strategies, barriers, and facilitators. Numerical and inductive content analysis identified themes among KT strategies. A final stakeholder consultation to discuss the results was conducted. RESULTS: This review included seventeen articles. Common outcomes included participant change in EBP knowledge and behaviour. Common barriers included a need for more resources, protected time, and funding. Most studies followed a multifaceted KT approach. Various KT strategies were used, primarily mentoring, workshops, case studies, and online tools. INTERPRETATION: Results underscored the need for tailored KT strategies for implementing EBP for children with CP. Additionally, user-friendly KT tools and involving mentors to facilitate the intervention can haste EBP uptake. Successful adoption depends on challenges in healthcare settings. This study provides insights into current KT strategies for advancing best practices for children with CP.

Employing multifaceted knowledge translation strategies in a pediatric rehabilitation setting can support the adoption of evidence-based practices for children with cerebral palsy.It is important to identify and address common barriers hindering the use of evidence-based practices in cerebral palsy rehabilitation in a specific context to tailor a knowledge translation strategy.Having qualified rehabilitation professionals act as evidence-based practice leaders in a healthcare setting is crucial for promoting evidence-based practices among other professionals.

Evidence-informed stakeholder consultations to promote rights-based approaches for children with disabilities.

Purpose: To 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. Methods: Mixed-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. Results: Stakeholders 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. Conclusion: The 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.

Factors associated with mathematical capacity in children with Developmental Coordination Disorder.

BACKGROUND: Developmental Coordination Disorder (DCD) is a condition characterized by difficulties in motor planning and coordination and affects 5 to 6% of all school-aged children. Children with DCD frequently present with difficulties with academic activities such as handwriting. However, no study to date has comprehensively described mathematical capacity and its potential associated factors in this high-risk group. AIMS: We aimed to describe the frequency and nature of mathematical difficulties of school-aged children with DCD and to evaluate potential factors associated with mathematical performance. METHODS: A total of 55 elementary school-aged children with DCD underwent comprehensive standardized assessments of mathematical, visuoperceptual (VP), attentional, visual-motor integration (VMI), and motor skills. The contribution of each factor to mathematical capacity was established using hierarchical multivariate linear regression models. RESULTS: Children with DCD (9.1 ± 1.5 years, 44 males) had lower overall mathematical capacity compared to normative data (-0.59 SD) on the KeyMath 3rd edition, with poorer performance in basic concepts and problem-solving. Thirty-eight percent of the sample performed below the 15th percentile in overall mathematical skills. VP skills were the most important factors associated with most mathematical domains. Thirty-four percent of the variance of overall mathematical capacity was explained by VP skills, inattention, VMI and motor impairments while controlling for household income (F [5,49]=5.029, p < .0001). CONCLUSION: Children with DCD present with mathematical difficulties in basic concepts and problem-solving, which are partially explained by VP skills. Our findings stress the important of systematically assessing mathematical difficulties children with DCD to ensure they receive the necessary support that leads to academic success.

Lessons learned in measuring patient engagement in a Canada-wide childhood disability network.

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.

The CHILD-BRIGHT Network, a Canadian childhood disability research Network, is dedicated to patient-oriented research. It engages more than 300 diverse stakeholders, including patient-partners, researchers, and healthcare professionals. We conducted a 3-years study aimed to measure patient engagement over time and delve into the perceived benefits, barriers, and facilitators from the perspectives of the different members. We administered the Community-Based Participatory Research (CBPR) questionnaire in Years 1­3 (completed by 167, 92, and 62 members, respectively) and the Public and Patient Engagement Evaluation Tool (PPEET) in Year 3 (completed by 95 members). Through the CBPR, we identified in which research processes were Network members involved (e.g., defining the research question, results dissemination), appraised the partnership between researchers and other stakeholders such as patient-partners, and determined the type of trust in this partnership. The use of the PPEET allowed us to explore patient engagement impact and what factors facilitate and limit patient engagement (e.g., communication and supports). CBPR results showed a consistently high satisfaction level with patient engagement, with increased comfort among patient-partners in expressing their views over time, showcasing positive collaborative dynamics. Most stakeholders reported a "true partnership" in their engagement, indicating widespread belief in equitable relationships. Additionally, critical reflective trust, allowing for discussing and resolving mistakes in collaborative working activities, increased over the years, with the highest endorsement in Year 3, demonstrating growing trust among stakeholders. The PPEET findings showed positive ratings for communication, support, and impact of patient engagement. Its qualitative responses identified advantages (e.g., increased project relevance), barriers (e.g., lack of diversity in members' demographic characteristics), facilitators (e.g., effective communication), and suggested improvements (e.g., ensuring goal clarity). In conclusion, our project showed that the partnership between researchers and patient-partners was beneficial, satisfactory and evolved positively over time. The findings are encouraging provided the breadth of the Network, where hundreds of members are primarily connected virtually. We learned that: (1) It is possible to measure patient engagement in a large Network, both at one point in time and over time, and multiple tools can be used together to get a better picture. (2) Regular evaluations are important to optimize the partnership and its impact. (3) The partnership can be improved and strengthened with time through ongoing collaboration, open communication, and a commitment to address the evolving needs and dynamics of all stakeholders involved.

Navigating the healthcare system with my child with CHD: parental perspectives on developmental follow-up practices.

BACKGROUND: Parents of children with CHD face several barriers when trying to access the services needed to support their child's development. In fact, current developmental follow-up practices may not identify developmental challenges in a timely manner and important opportunities for interventions may be lost. This study aimed to explore the perspectives of parents of children and adolescents with CHD with respect to developmental follow-up in Canada. METHODS: Interpretive description was used as a methodological approach for this qualitative study. Parents of children aged 5-15 years with complex CHD were eligible. Semi-structured interviews that aimed to explore their perspectives regarding their child's developmental follow-up were conducted. RESULTS: Fifteen parents of children with CHD were recruited for this study. They expressed that the lack of systematic and responsive developmental follow-up services and limited access to resources to support their child's development placed an undue burden on their families, and as a result, they needed to assume new roles as case managers or advocates to address these limitations. This additional burden resulted in a high level of parental stress, which, in turn, affected the parent-child relationship and siblings. CONCLUSIONS: The limitations of the current Canadian developmental follow-up practices put undue pressure on the parents of children with complex CHD. The parents stressed the importance of implementing a universal and systematic approach to developmental follow-up to allow for the timely identification of challenges, enabling the initiation of interventions and supports and promoting more positive parent-child relationships.

White matter microstructure is differently associated with executive functioning in youth born with congenital heart disease and youth born preterm.

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.

Participate CP 2: optimising participation in physically active leisure for children with cerebral palsy - protocol for a phase III randomised controlled trial.

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.

Supporting families and caregivers of children with disabilities through a parent peer mentor (PPM): experiences from a patient-oriented research network.

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.

In this paper, we add new insights into the complementary role of the Parent Peer Mentor (PPM) in promoting optimal patient engagement practices in a national patient-oriented research network. The PPM approached 50 parent-partners and scheduled a 1-on-1 initial telephone call to offer support for any issues arising. We analyzed the recorded interactions between the PPM and the network's parent-partners of children with brain-based disabilities as well as an interview with the PPM. The PPM's liaison role contributed to establishing reciprocal connections with parent-partners in a nation-wide research network. The perceived impacts at the individual level included: (1) parents felt more connected to the PPM and were comfortable sharing their experiences and emotions, and (2) researchers learned more about parents' experiences in partnering with them and were able to address the issues raised such as adjustment of the meeting schedule and clarification of roles within the research team. At the Network level, adjustments were made based on feedback from the PPM to include structural adaptations to the compensation guidelines and use of lay language in our communications to patient-partners. Community-building and authentic partnerships were enhanced by the increased understanding of the experiences of patient-partners.

Psychological Well-Being, Everyday Functioning, and Autonomy In Emerging Adults with a Congenital Heart Defect.

OBJECTIVE: To characterize the psychological well-being, everyday functioning, and autonomy of emerging adults with congenital heart disease (CHD) and explore how they relate to the executive function (EF) deficits commonly observed in this population. STUDY DESIGN: Questionnaires assessing psychological well-being (encompassing psychosocial functioning and resilience), EF, and age-appropriate indicators of everyday function and autonomy (eg, housing, education, employment, relationship status) were completed by participants with CHD (16-26 years) who underwent open-heart surgery during infancy and age- and sex-matched controls. RESULTS: A total of 58 emerging adults with CHD and 57 controls participated in this study. Mean scores on the resilience and psychosocial functioning questionnaires were not significantly different between CHD and control participants. Emerging adults with CHD also did not differ from controls in terms of holding a driver's license, involvement in a romantic relationship, or current employment status. Multiple linear regression identified that better EF was associated with better psychological well-being. CONCLUSIONS: This study supports the need for systematic screening for EF deficits during adolescence and early adulthood to promote optimal well-being in this population. Further research is required to continue to document the everyday experiences of adolescents and young adults with CHD to identify protective factors associated with a successful and satisfying transition to adult life.

Pediatric tele-coaching fidelity evaluation: Feasibility, perceived satisfaction and usefulness of a new measure.

Background: To 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. Methods: In 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. Results: One 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). Conclusions: A 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.

Patient engagement in a national research network: barriers, facilitators, and impacts.

BACKGROUND: Little is known about patient engagement in the context of large teams or networks. Quantitative data from a larger sample of CHILD-BRIGHT Network members suggest that patient engagement was beneficial and meaningful. To extend our understanding of the barriers, facilitators, and impacts identified by patient-partners and researchers, we conducted this qualitative study. METHODS: Participants completed semi-structured interviews and were recruited from the CHILD-BRIGHT Research Network. A patient-oriented research (POR) approach informed by the SPOR Framework guided the study. The Guidance for Reporting Involvement of Patients and the Public (GRIPP2-SF) was used to report on involvement of patient-partners. The data were analyzed using a qualitative, content analysis approach. RESULTS: Twenty-five CHILD-BRIGHT Network members (48% patient-partners, 52% researchers) were interviewed on their engagement experiences in the Network's research projects and in network-wide activities. At the research project level, patient-partners and researchers reported similar barriers and facilitators to engagement. Barriers included communication challenges, factors specific to patient-partners, difficulty maintaining engagement over time, and difficulty achieving genuine collaboration. Facilitators included communication (e.g., open communication), factors specific to patient-partners (e.g., motivation), and factors such as respect and trust. At the Network level, patient-partners and researchers indicated that time constraints and asking too much of patient-partners were barriers to engagement. Both patient-partners and researchers indicated that communication (e.g., regular contacts) facilitated their engagement in the Network. Patient-partners also reported that researchers' characteristics (e.g., openness to feedback) and having a role within the Network facilitated their engagement. Researchers related that providing a variety of activities and establishing meaningful collaborations served as facilitators. In terms of impacts, study participants indicated that POR allowed for: (1) projects to be better aligned with patient-partners' priorities, (2) collaboration among researchers, patient-partners and families, (3) knowledge translation informed by patient-partner input, and (4) learning opportunities. CONCLUSION: Our findings provide evidence of the positive impacts of patient engagement and highlight factors that are important to consider in supporting engagement in large research teams or networks. Based on these findings and in collaboration with patient-partners, we have identified strategies for enhancing authentic engagement of patient-partners in these contexts.

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.

Application of the child community health inclusion index for measuring health inclusion of children with disabilities in the community: a feasibility study.

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.

Characteristics of Inclusive Web-Based Leisure Activities for Children With Disabilities: Qualitative Descriptive Study.

BACKGROUND: The 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. OBJECTIVE: This study aimed to identify factors that may facilitate or prevent the participation of children with disabilities in web-based leisure activities. METHODS: We 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. RESULTS: A 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. CONCLUSIONS: Web-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.

Academic Challenges in Developmental Coordination Disorder: A Systematic Review and Meta-Analysis.

AIMS: Developmental Coordination Disorder (DCD) is a chronic condition affecting motor coordination in daily activities. While motor difficulties are well documented in this population, it is unclear how frequent and to what extent academic activities are affected. This systematic review aims to comprehensively summarize the knowledge regarding the prevalence and extent of academic difficulties in reading, writing and mathematics in school-aged children with DCD. METHODS: Two independent reviewers analyzed original studies on academic difficulties in school-aged children with DCD. A binary random-effects model was used to calculate the pooled prevalence by academic difficulty. A random-effects model using standardized mean differences (g statistic) was calculated to estimate the extent of the academic difficulties. RESULTS: Twenty-four studies were included. A pooled prevalence of 84% of handwriting difficulties and 89.5% of mathematical difficulties was reported. No pooled prevalence of difficulties could be calculated for the other academic outcomes. Children with DCD present with poorer performance in handwriting legibility (g = -1.312) and speed (g = -0.931), writing (g = -0.859), mathematics (g = -1.199) and reading (g = -1.193). CONCLUSIONS: This review highlights the high frequency and severity of academic difficulties in children with DCD, specifically in mathematics, which stresses the importance of evaluating academic performance to target interventions to support optimal functioning in daily life.

Identifying developmental challenges of youth with congenital heart defects: A patient-oriented perspective.

BACKGROUND: Youth with congenital heart disease (CHD) are at high risk for a range of developmental impairments that become evident at different times across childhood and adolescence. This study aimed to explore perspectives of youth with CHD with respect to their developmental follow-up across childhood. METHODS: Interpretive description was used as a methodological approach for this qualitative study. Youth aged 12-22 years with CHD requiring open-heart surgery before 2 years of age and who had received health services in Canada since birth were enrolled. RESULTS: Ten youth with CHD, two males and eight females, aged 13-22 years (mean 19.8) participated in this study. With higher social and academic demands as well as increased level of autonomy associated with older age, some youth faced new challenges that they had not encountered as children. Youth with CHD identified four aspects of the continuum of care as needing to be changed to better respond to their needs. First, the format of developmental follow-up needs to be adapted to their unique challenges. Second, resources must be more easily accessible throughout childhood and adolescence. Third, planning for transition to adult care is essential to ensure continuity of services. Finally, they identified that the school system is an essential component of the continuum of care. CONCLUSIONS: Adolescents and young adults with CHD are at high risk of developing physical, academic and psychosocial challenges; however, timely identification of challenges does not appear to be optimal across domains and transition points, from the perspective of the youth themselves. Youth with CHD reported not having the resources and supports they required to optimize their functioning. Our findings suggest that several approaches could be adopted to enhance identification and outcomes to address the limitations of current Canadian practices.

Content development of the Child Community Health Inclusion Index: An evaluation tool for measuring inclusion of children with disabilities in the community.

BACKGROUND: Addressing barriers in the environment can contribute to health and quality of life for children with disabilities and their families. The Community Health Inclusion Index (CHII) is a measurement tool developed in the United States to identify environmental barriers and facilitators to community health inclusion. The CHII adopts an adult viewpoint and aspects crucial for children may have been omitted. AIMS: This study aimed to develop a comprehensive list of items that are relevant for the community inclusion of children with disabilities in the Canadian context. METHODS: The relevance and priority of items generated from a review of existing guidelines and best practice recommendations for community inclusion were rated as a dichotomous response and discussed by an expert panel in relevant fields related to children with disabilities. RESULTS: A total of 189 items from 12 instruments and best practice guidelines were identified. Expert consensus contributed to a relevant and comprehensive list of items. Expert suggestions were considered to refine and reduce the item list. CONCLUSION: This study highlights the importance of a child version of a community inclusion tool, as the needs of children with disabilities differ from those of adults. It can help communities improve inclusion of children with disabilities and inform health promotion initiatives for this population.

Telerehabilitation for Children and Youth with Developmental Disabilities and Their Families: A Systematic Review.

AIM: To determine the level of evidence for the effectiveness of telerehabilitation against comparison interventions in improving child- and parent-related outcomes in children and youth with developmental disabilities. METHOD: A systematic approach, comprised of a comprehensive search; transparent study selection, data extraction, quality assessment by independent reviewers; and synthesis of sufficiently similar data (per diagnostic group, health profession, and overall level of evidence for each outcome) was undertaken. RESULTS: Fifty-five studies (29 randomized trials) were included across six diagnostic groups and ten health professions. Common telerehabilitation targets varied across diagnostic groups and included motor function, behavior, language, and parental self-efficacy. Telerehabilitation was found to be either more effective or as effective versus comparison intervention in improving 46.9% or 53.1% of outcomes, respectively. It was never found to be detrimental or less effective. Strong to moderate, limited, and insufficient levels of evidence were found for 36.5%, 24.5%, and 38.6% of the outcomes, respectively. CONCLUSION: There is sufficient evidence suggesting that telerehabilitation is a promising alternative when face-to-face care is limited. It is comparable to usual care and is more effective than no treatment. Blending in-person and telerehabilitation approaches could be beneficial for the post-pandemic future of rehabilitation in pediatric care.