Using Computational Text Mining to Understand Public Priorities for Disability Policy Towards Children in Canadian National Consultations

Identifying policy preferences from public consultations presents a challenge to national and local governments. Computational text mining approaches provide a useful strategy for analyzing the large-scale textual data emerging from these policy processes. In this study, we developed an inductive and deductive text mining approach to understand disability-related policy priorities. This approach is applied to data from the nationwide disability policy consultation conducted in 2016 by the Government of Canada. This process included 18 town hall meetings, 9 thematic roundtables, and online submissions from 92 stakeholders. Transcripts of these consultations were made available to researchers. Three broad research questions were asked of this data, focused on key themes; differences by city size and type of consultation; and impact of two global policy frameworks. The study identified a number of key themes and saw differences by city size. The study identified content related to both the CRPD and CRC

THE CHALLENGES OF CAREGIVERS OF CHILDREN WITH AUTISM SPECTRUM DISORDERS COMORBIDITY DURING THE COVID-19 PANDEMIC IN SERBIA

Background: Children with Autism Spectrum Disorders (ASD) experience significantly higher prevalence of other mental disorders, which amplifies their need for overall support. The outbreak of novel coronavirus (COVID-19) resulted in restrictions and limited access to different services with great challenge for families and children with ASD. Subjects and methods: We used an electronic SurveyMonkey questionnaire to examine the experiences of 114 caregivers of children with ASD. We compared: (a) level of support by the child’s school, changes in child behavior, and priority needs for families of ASD and ASD with comorbidities (ASD+) children, during pandemic, and (b) developmental history and diagnosis for ASD and ASD+ children before the pandemic. Results: Our research shows significant behavioral difficulties in the population with ASD and ASD+ that arose in the field of altered living conditions and overall functioning during the COVID-19 pandemic. Statistically significant results comparing ASD to ASD+ children we found in area of getting additional help and support before the outbreak of the pandemic (47.1% vs 16.0%, p=0.002), as well as in worsening of sleep problems, statistically significant more common in children with ASD+ (ASD+ 47.7% vs. ASD 25.7%, p=0.046). Conclusions: Our findings can contribute to the faster development and implementation of protocols for dealing with situations such as pandemics, related to the vulnerable population of children with ASD and their caregivers

Play and Be Happy? Leisure Participation and Quality of Life in School-Aged Children with Cerebral Palsy

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

A strategic initiative to facilitate knowledge translation research in rehabilitation

While there is a growing body of literature supporting clinical decision-making for rehabilitation professionals, suboptimal use of evidence-based practices in that field persists. A strategic initiative that ensures the relevance of the research and its implementation in the context of rehabilitation could 1) help improve the coordination of knowledge translation (KT) research and 2) enhance the delivery of evidence-based rehabilitation services offered to patients with physical disabilities. This paper describes the process and methods used to develop a KT strategic initiative aimed at building capacity and coordinating KT research in physical rehabilitation and its strategic plan; it also reports the initial applications of the strategic plan implementation

Engaging stakeholders in rehabilitation research: a scoping review of strategies used in partnerships and evaluation of impacts

Abstract: Purpose: To describe how stakeholder engagement has been undertaken and evaluated in rehabilitation research. Methods: A scoping review of the scientific literature using five search strategies. Quantitative and qualitative analyses using extracted data. Interpretation of results was iteratively discussed within the team, which included a parent stakeholder. Results: Searches identified 101 candidate papers; 28 were read in full to assess eligibility and 19 were included in the review. People with disabilities and their families were more frequently involved compared to other stakeholders. Stakeholders were often involved in planning and evaluating service delivery. A key issue was identifying stakeholders; strategies used to support their involvement included creating committees, organizing meetings, clarifying roles and offering training. Communication, power sharing and resources influenced how stakeholders could be engaged in the research. Perceived outcomes of stakeholder engagement included the creation of partnerships, facilitating the research process and the application of the results, and empowering stakeholders. Stakeholder engagement outcomes were rarely formally evaluated. Conclusions: There is a great interest in rehabilitation to engage stakeholders in the research process. However, further evidence is needed to identify effective strategies for meaningful stakeholder engagement that leads to more useful research that positively impacts practice. Implications for Rehabilitation Using several strategies to engage various stakeholders throughout the research process is thought to increase the quality of the research and the rehabilitation process by developing proposals and programs responding better to their needs. Engagement strategies need to be better reported and evaluated in the literature. Engagement facilitate uptake of research findings by increasing stakeholders' awareness of the evidence, the resources available and their own ability to act upon a situation. Factors influencing opportunities for stakeholder engagement need to be better understood

Using an evidence-based online module to improve parents’ ability to manage their child with Developmental Coordination Disorder

Background : Developmental coordination disorder (DCD) is a prevalent neurodevelopmental disorder. Best practices include raising parents’ awareness and building capacity but few interventions incorporating these best practices are documented. Objective : To examine whether an evidence-based online module can increase the perceived knowledge and skills of parents of children with DCD, and lead to behavioral changes when managing their child’s health condition. Methods : A mixed-methods, before-after design guided by the theory of planned behavior was employed. Data about the knowledge, skills and behaviors of parents of children with DCD were collected using questionnaires prior to completing the module, immediately after, and three months later. Paired T-tests, sensitivity analyses and thematic analyses were performed on data as appropriate. Results: One hundred-sixteen, 81 and 58 participants respectively completed the three questionnaires. For knowledge and skills, post- and follow-up scores were significantly higher than baseline scores (p<0.01). Fifty-two (64%) participants reported an intention to change behavior post-intervention and 29 (50%) participants had tried recommended strategies at follow-up. Three themes emerged to describe parents’ behavioral change: sharing information, trialing strategies and changing attitudes. Factors influencing parents’ ability to implement these behavioral changes included clear recommendations, time, and ‘right’ attitude. Perceived outcomes associated with the parental behavioral changes involved improvement in well-being for the children at school, at home, and for the family as a whole. Conclusions : The online module increased parents’ self-reported knowledge and skills in DCD management. Future research should explore its impacts on children’s long-term outcomes

Developing a Knowledge Translation Strategy for a Centre of Childhood Disability Research: Description of the Process

Knowledge translation (KT) is a topic of interest for researchers; however, little has been published about how to plan and prioritize KT activities. This article describes the development and outcomes of a KT strategic planning activity for a research organization. An online survey and planning meeting resulted in the identification of six priority areas: engaging families, nurturing partnerships, optimizing access to knowledge, KT capacity building, advancing KT science, and funding for future KT activities. The organization collectively determined short- and long-term objectives, strategies, and measurable outcomes for the KT priority areas. The strategic planning process helped with prioritizing KT activities and engaged members in a collaborative discussion of mutual interest. The process described may be useful for others interested in developing KT strategic plans