Alignment of Canada's COVID-19 policy response with barriers and facilitators for coping reported by caregivers of youth with developmental delays, disorders, and disabilities.

Introduction: The UNICEF-WHO Global Report on Developmental Delays, Disorders, and Disabilities is an ongoing initiative aimed at increasing awareness, compiling data, providing guidance on strengthening health systems, and engaging country-level partners. Data from its caregiver survey assessing impacts of the COVID-19 pandemic showed that half of youths with developmental delays and disabilities (DDDs) and their caregivers struggled to cope, with a significant portion reporting a lack of supports and difficulty managing the worsening of the child's symptoms in isolation. Governments created service strategies supporting vulnerable groups. Little is known about the alignment between COVID-19 policies for persons with disabilities and their lived experiences. Contextualizing caregivers' experiences can promote the development of tailored public supports for these families following a public health crisis. Methods: Online survey data were collected from June-July 2020, leading to a convenience sample of caregivers of youth with DDDs across Canada. Respondents answered two open-ended questions regarding challenges and coping strategies during the pandemic. We conducted a thematic analysis of responses using inductive coding on NVivo software. Overarching codes derived from the dataset were contextualized using an analysis of provincial policies published during the pandemic. Parallels with these policies supported the exploration of families' and youths' experiences during the same period. Results: Five hundred and seventy-six (N = 576) participants answered open-ended questions. Barriers to coping included family mental health issues, concerns about the youths' regression, challenges in online schooling, limited play spaces, and managing physical health during quarantine. Environmental barriers encompassed deteriorating family finances, loss of public services, and a lack of accessible information and supports. In contrast, caregivers reported coping facilitators, such as family time, outdoor activities, and their child's resilience. Environmental facilitators included community resources, public financial supports, and access to telehealth services. Few COVID-19 policies effectively addressed caregiver-identified barriers, while some restrictions hindered access to facilitators. Conclusion: Prioritizing needs of families of youths with DDDs during public health emergencies can significantly impact their experiences and mental health. Enhancing financial benefits, providing telehealth services, and creating inclusive public play spaces are priority areas as we navigate the post-pandemic landscape.

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.

A Portrait of the Rights of Children with Disabilities in Nigeria: A Policy Review.

Worldwide, 200 million children experience disability, with the vast majority living in low- and middle-income countries. The United Nations Convention on the Rights of the Child (CRC) places great importance on the rights of all children for the opportunities for survival, growth, health, and development. A subsequent document, the UN Convention on the Rights of Persons with Disabilities (CRPD), identifies children with disabilities as rights bearers who should be considered in all policies and programming worldwide. Nigeria, in 1991 and 2010, ratified the CRC and the CRPD, respectively. Nonetheless, knowledge of the extent to which their disability and child-directed policies considers these two key conventions, in ensuring that children and children with disabilities have access to care within their right remains limited. This study examined the extent to which Nigeria's current disability and childhood policies have integrated the two child and disability related conventions from the UN. Using a structured search of databases and Nigerian federal and state government websites, we conducted a policy review to identify their disability and child-related disability policies. We also included the CRC and CRPD reports submitted by the Nigerian government to the United Nations Office of the High Commissioner for Human Rights (OHCHR) (2008 and 2010 cyclical year). A thematic analysis, based on the CRC and CRPD report, identified the following six themes: participation, support systems, awareness raising, factors associated with adherence to the CRC, laws and rights, and services. The review showed that the available Nigerian disability policies were federal, with some state policies which aligned with the CRC and CRPD. Also identified was the lack of disability policies specific to children and their families. We concluded that, to ensure proper inclusion of the rights of all children, including those with disabilities, in Nigeria there is a need for a more optimal uptake of recommendations of the CRC and CRPD as laid out by the UN.

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.

Promoting Health through Accessible Public Playgrounds.

Every child, irrespective of socioeconomic status, ethnicity, or ability, deserves the fundamental right to experience play, which is a powerful and enriching activity that fosters their physical and mental health. Regrettably, most public play spaces hinder the complete inclusion of children with disabilities, with the main reason being a lack of universal accessibility. This study identified existing international and Canadian policies and community best practices related to inclusive playgrounds, and gathered stakeholders' opinions on the present condition of playgrounds, including challenges faced by children with disabilities and recommendations to make playgrounds inclusive. The questionnaires were completed by 97 participants. In addition, 10 individual interviews and three focus groups were performed. Ten policy documents and five community best practices were found. Our investigation identified factors that influence the design and implementation of inclusive playgrounds, categorized into three main areas: physical, social, and political environments. The results indicate that children with disabilities lack opportunities to engage fully in the physical and social aspects of playgrounds and spontaneous play activities with their peers. Notably, children with multiple disabilities may not feel welcomed or included in existing public play spaces.

How Did Governments Address the Needs of People With Disabilities During the COVID-19 Pandemic? An Analysis of 14 Countries' Policies Based on the UN Convention on the Rights of Persons With Disabilities.

BACKGROUND: People with disabilities have experienced heightened social risks in the context of the pandemic, resulting in higher rates of infection and mortality. They have also borne elevated burdens associated with public health measures. The United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) obliges its 184 state parties to eliminate discrimination and ensure equality and inclusion for persons with disabilities, including protection and safety in situations of emergency. It remains unclear to what extent national COVID-19 policies have aligned with these commitments under the UNCRPD. Our objective in this exploratory study was to assess alignment between the UNCRPD indicators and COVID-19 policies from 14 countries with the goal of informing policy development that is inclusive of persons with disabilities and responsive to rights under the UNCRPD. METHODS: We identified COVID-19 policy documents from 14 purposively selected countries. Country selection considered diversity based on geographic regions and national income levels, with restriction to those countries that had ratified the UNCRPD and had English or French as an official language. We used a computational text mining approach and developed a complex multilevel dictionary or categorization model based on the UNCRPD Bridging the Gap indicators proposed by the Office of the High Commissioner on Human Rights (OHCHR). This dictionary was used to assess the extent to which indicators across the entirety of the UNCRPD were represented in the selected policies. We analyzed frequency of associations with UNCRPD, as well as conducting 'key word in context' analyses to identify themes. RESULTS: We identified 764 COVID-19 national policy documents from the period of January 2020 to June 2021. When analyzed in relation to the Articles of the UNCRPD, the most frequently identified were Articles 11 (risk and humanitarian emergencies), 23 (home and family), 24 (education), and 19 (community living). Six countries produced 27 policies that were specifically focused on disability. Common themes within these documents included continuation of services, intersectionality and equity, and disability considerations in regulations and public health measures. CONCLUSION: Analyzing country policies in light of the UNCRPD offers important insights about how these policies do and do not align with states' commitments. As new policies are developed and existing ones revised, more comprehensive approaches to addressing the rights of persons with disabilities are urgently needed.

Children with Disabilities in Canada during the COVID-19 Pandemic: An Analysis of COVID-19 Policies through a Disability Rights Lens.

Children with disabilities were especially vulnerable during the COVID-19 pandemic, and policies designed to mitigate its effects were limited in addressing their needs. We analyzed Canadian policies related to children with disabilities and their families during the COVID-19 pandemic to identify the extent to which these policies aligned with the United Nations Convention on the Rights of Persons with Disabilities (UN CRPD) and responded to their mental health needs by conducting a systematic collection of Canadian provincial/territorial policies produced during the pandemic, building a categorization dictionary based on the UN CRPD, using text mining, and thematic analysis to identify policies' alignment with the UN CRPD and mental health supports. Mental health was addressed as a factor of importance in many policy documents, but specific interventions to promote or treat mental health were scarce. Most public health policies and recommendations are related to educational settings, demonstrating how public health for children with disabilities relies on education and community that may be out of the healthcare system and unavailable during extended periods of the pandemic. Policies often acknowledged the challenges faced by children with disabilities and their families but offered few mitigation strategies with limited considerations for human rights protection.

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.

Applying behaviour change models to policy-making: development and validation of the Policymakers' Information Use Questionnaire (POLIQ).

BACKGROUND: The purpose of this study was to develop and validate the Policymakers' Information Use Questionnaire (POLIQ) to capture the intention of individuals in decision-making positions, such as health policy-makers, to act on research-based evidence in order to inform theory and the application of behaviour change models to decision-making spheres. METHODS: The development and validation comprised three steps: item generation, qualitative face validation with cognitive debriefing and factorial construct validation. Confirmatory factor analysis was applied to estimate item-domain correlations for five predefined constructs relating to content, beliefs, behaviour, control and intent. Cronbach's alpha coefficient was calculated to assess the overall consistency of questionnaire items with the predefined constructs. Participants in the item generation and face validation were health and policy researchers and two former decision-makers (former assistant deputy ministers) from the Canadian provincial level. Participants in the construct validation were 39 Canadian decision-makers at various positions of municipal, provincial and federal jurisdiction who participated in a series of policy dialogues focused on childhood disability. RESULTS: Cognitive debriefing allowed for small adjustments in language for clarity, including simultaneous validation of the English and French questionnaires. Participants found that the questions were clear and addressed the domains being targeted. Internal consistency of items belonging to the respective questionnaire domains was moderate to high, with estimated Cronbach's alpha values ranging from 0.67 to 0.84. Estimated item-domain correlations indicated moderate to high measurement performance for the domains norm, control and beliefs, whereas weak to moderate correlations resulted for the constructs content and intent. Estimated imprecision of factor loadings (95% confidence interval widths) was considerable for the questionnaire domains content and intent. CONCLUSION: Measuring decision-makers' behaviour in relation to research evidence use is challenging. We provide initial evidence on face validity and appropriate measurement properties of the POLIQ based on a convenience sample of decision-makers in social and health policy. Larger validation studies and further psychometric property testing will support further utility of the POLIQ.

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.

Expert Appraisal of the 2022 Canadian Para Report Card on Physical Activity for Children and Adolescents With Disabilities.

This report provides an expert appraisal of the Canadian Para Report Card on physical activity (PA) for children and adolescents with disabilities. Thirteen indicators were graded by a panel of researchers, representatives from disability and PA organizations, and parents of children and adolescents with disabilities using benchmarks of the Global Matrix 4.0 and previous Canadian PA Report Cards. Facilitated panel discussions were used to appraise the available evidence based on data gaps, opportunities, and recommendations. The available data sources included four nationally generalizable or representative data sets. Grades were assigned to 8/13 indicators and ranged from B+ to F. Data gaps in measurement and national surveillance systems were identified. Ableism was an issue identified within some of the reporting benchmarks. The absence of PA from existing accessibility legislation in Canada was a policy gap of concern. Recommendations related to research, surveillance, and policy are provided to enhance PA among children and adolescents with disabilities in Canada.

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.

Challenges and future directions in the measurement of evidence-based practice: Qualitative analysis of umbrella review findings.

RATIONALE, AIMS AND OBJECTIVES: An important aspect of scholarly discussions about evidence-based practice (EBP) is how EBP is measured. Given the conceptual and empirical developments in the study of EBP over the last 3 decades, there is a need to better understand how to best measure EBP in educational and clinical contexts. The aim of this study was to identify and describe the main challenges, recommendations for practice, and areas of future research in the measurement of EBP across the health professions as reported by systematic reviews (SRs). METHODS: We conducted a secondary analysis of qualitative data obtained in the context of a previously published umbrella review that aimed to compare SRs on EBP measures. Two reviewers independently extracted excerpts from the results and discussion/conclusion sections of the 10 included SRs that aligned with the three research aims. An iterative six-phase reflexive thematic analysis according to Braun and Clarke was conducted. RESULTS: Our thematic analysis produced five themes describing the main challenges associated with measuring EBP, four themes outlining main recommendations for practice, and four themes representing areas of future research. Challenges include limited psychometric testing and validity evidence for existing EBP measures; limitations with the self-report format; lack of construct clarity of EBP measures; inability to capture the complexity of the EBP process and outcomes; and the context-specific nature of EBP measures. Reported recommendations for practice include acknowledging the multidimensionality of EBP; adapting EBP measures to the context and re-examining the validity argument; and considering the feasibility and acceptability of measures. Areas of future research included the development of comprehensive, multidimensional EBP measures and the need for expert consensus on the operationalization of EBP. CONCLUSIONS: This study suggests that existing measures may be insufficient in capturing the multidimensional, contextual and dynamic nature of EBP. There is a need for a clear operationalization of EBP and an improved understanding and application of validity theory.

Socio-demographic disparities in receipt of clinical health care services during the COVID-19 pandemic for Canadian children with disability.

BACKGROUND: Little is known about the experience of receiving in-person and virtual clinical health care services during the COVID-19 pandemic for Canadian children with developmental disabilities and delays facing multiple layers of vulnerability (e.g., low income, low educational attainment families). We examined the relationship between socio-demographic factors and the receipt of these services (physical and mental health services) during COVID-19 for Canadian children with these conditions. METHODS: Data collected in Canada for the Global Report on Developmental Delays, Disorders and Disabilities were used. The survey: (1) was developed and disseminated in collaboration with caregivers of children with disabilities, (2) included topics such as response to the pandemic and receipt of services and supports, and (3) documented the experiences of a non-random convenience sample of caregivers of children (any age) with these conditions during and prior to the pandemic. We used four logistic regression models to assess the association between socio-demographic factors and receipt of services. RESULTS: Being a single parent, having low educational attainment (high school or less), having low income (making less than $40,000 per year), working less than full time (working part-time, working reduced hours due to COVID, retired, stay home parent or student), as well as male gender and older age of the child with disability were factors associated with decreased likelihood of receiving services. CONCLUSION: Our findings point to the need for tailoring services for families of children with disabilities, particularly low socioeconomic status families, to ensure continuity of care during public health emergencies.

Factors associated with resilience among children and youths with disability during the COVID-19 pandemic.

There is evidence of negative impact of social distancing and confinement measures to manage the COVID-19 pandemic on children, including increased anxiety and depression and behaviour difficulties. Paradoxically, positive impacts like increased support and more self-care activities have also been documented. Little is known about the impact of the COVID-19 pandemic on the children with disability and the potential role of familial, environmental, and biological factors on mitigating this impact. The aims of the study were 1) identifying profiles of functioning across multiple domains during the COVID-19 pandemic and 2) examining the extent to which parenting self-efficacy, support in accessing schooling, and type of diagnosis predict the likelihood of resilience among children with disability, after controlling for household income and single-parent status. An online survey developed from COVID-19 guidance recommendations, was available from June 11- July 21, 2020, and resulted in a convenience sample of caregivers across Canada (n = 883) of children with disability (mean age of 9.4 years old, SDage = 5.7, 58% male). We conducted latent class analysis to examine the number of latent profiles on caregiver-reported changes of 12 functioning domains, as either 'worsening', 'no change', or 'improving'. Most participants belonged to 'stable' or 'worsening' profiles. However, we identified a small subgroup with improvements in child functioning, a pattern indicative of a 'resilient' profile. Using a multinomial logistic regression, we found that diagnosis type, parenting self-efficacy and support in accessing schooling were associated with membership in the Resilient or Stable profiles compared to the Worsening profile, after controlling for single-parent status and income. Taken together, our findings identified variability in responses to adversity that is dependent on the child's diagnosis type, parenting self-efficacy, and support in accessing schooling. By identifying potentially modifiable predictors of resilience, namely parenting self-efficacy and support in accessing schooling, we signal the potential for tailored supports for different diagnoses, through interventions that enhance caregiver empowerment, access to schooling, access to health and social services, and/or mitigate disparities resulting from social disadvantage.

The Effect of Context-Based Interventions at the Systems-Level on Participation of Children with Disabilities: A Systematic Review.

AIMS: To synthesize evidence on the impact of context-based interventions on the participation of children with disabilities in the community. METHODS: A systematic review was conducted using the American Academy for Cerebral Palsy and Developmental Medicine Guidelines for systematic reviews. Seven databases were searched; articles included were on children with developmental disabilities under the age of 19 years, describing systems-level, context-based interventions aimed to improve participation and Participation-related outcomes of the Family of Participation-related Constructs framework. Intervention characteristics were coded using the Community Wellbeing Framework (CWF). RESULTS: Eleven articles were included for knowledge synthesis. Four studies were level I, II, and III based on the Center for Evidence-Based Medicine hierarchy. All four showed that context-based interventions had a positive effect on participation and participation-related outcomes. All 11 studies had intervention properties that were coded to at least one domain on the CWF. CONCLUSION: There is a scarcity of high-quality studies that focus on context-based interventions at the systems-level, as opposed to the individual-level. Albeit low-level quality, existing evidence emphasized the importance of using known facilitators to participation, such as staff training, peer mentorship, awareness-raising, and development of partnerships to change the system and promote participation.

Changes in Use of a Leisure Activity Mobile App for Children With Disabilities During the COVID-19 Pandemic: Retrospective Study.

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

Designing User-Centered Mobile Health Initiatives to Promote Healthy Behaviors for Children With Disabilities: Development and Usability Study.

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