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

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

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

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

The meaning of play for children and young people withphysical disabilities: A systematic thematic synthesis

Children and young people with physical disabilities are often reported to play less than their typically developing peers. Few studies explore the meaning of play from the child's perspective; this study carried out a thematic synthesis of the findings of qualitative studies about the meaning of play following the Preferred Reporting Items for Systematic Reviews and Meta‐Analyses guidelines. Methods: A search of CINAHL, AHMED, PsycINFO, MEDLINE, EMBASE, and ERIC was undertaken between September 2015 and March 2016. Qualitative studies exploring the meaning of play from the perspective of 0‐ to 18‐year‐olds with physical disabilities impacting function were included. Quality appraisal and thematic synthesis were undertaken in order to develop analytical themes. Results: Thirteen studies met the inclusion criteria in part addressing the meaning of play for children and young people with physical disabilities. Synthesis of the findings identified 5 analytical themes: Play can feel both positive and negative; play can draw attention towards or awayfrom my disability; play is a social interaction; I participate differently to my peers, and needing help feels normal. Conclusions: The themes highlight the potential for play experiences of individuals with physical disabilities being overlooked by parents and professionals; further research is needed to explore play experience from these individual's perspective

Translation and validation of the Brazilian version of the Cerebral Palsy Quality of Life Questionnaire for Children – child report

AbstractObjectiveTo verify the psychometric properties of the Cerebral Palsy: Quality of Life Questionnaire Children – child report (CPQol-Child) questionnaire, after it was translated and culturally adapted into Brazilian Portuguese.MethodsAfter the translation and cultural adaptation of the tool into Brazilian Portuguese, the questionnaire was answered by 65 children with cerebral palsy, aged 9–12 years. The intraclass correlation coefficient and Cronbach's alpha were used to assess the reliability and internal consistency of the tool and its validity was analyzed through the association between CPQol-Child: self-report tool and Kidscreen-10 using Pearson's correlation coefficient.ResultsInternal consistency ranged from 0.6579 to 0.8861, the intraobserver reliability from 0.405 to 0.894, and the interobserver from 0.537 to 0.937. There was a weak correlation between the participation domain and physical health of CPQol-Child: self-report tool and Kidscreen-10.ConclusionThe analysis suggests that the tool has psychometric acceptability for the Brazilian population

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

Aquatic therapy for children with Duchenne muscular dystrophy: a pilot feasibility randomised controlled trial and mixed-methods process evaluation.

BACKGROUND: Duchenne muscular dystrophy (DMD) is a rare disease that causes the progressive loss of motor abilities such as walking. Standard treatment includes physiotherapy. No trial has evaluated whether or not adding aquatic therapy (AT) to land-based therapy (LBT) exercises helps to keep muscles strong and children independent. OBJECTIVES: To assess the feasibility of recruiting boys with DMD to a randomised trial evaluating AT (primary objective) and to collect data from them; to assess how, and how well, the intervention and trial procedures work. DESIGN: Parallel-group, single-blind, randomised pilot trial with nested qualitative research. SETTING: Six paediatric neuromuscular units. PARTICIPANTS: Children with DMD aged 7-16 years, established on corticosteroids, with a North Star Ambulatory Assessment (NSAA) score of 8-34 and able to complete a 10-m walk without aids/assistance. Exclusions: > 20% variation between baseline screens 4 weeks apart and contraindications. INTERVENTIONS: Participants were allocated on a 1 : 1 ratio to (1) optimised, manualised LBT (prescribed by specialist neuromuscular physiotherapists) or (2) the same plus manualised AT (30 minutes, twice weekly for 6 months: active assisted and/or passive stretching regime; simulated or real functional activities; submaximal exercise). Semistructured interviews with participants, parents (n = 8) and professionals (n = 8) were analysed using Framework analysis. An independent rater reviewed patient records to determine the extent to which treatment was optimised. A cost-impact analysis was performed. Quantitative and qualitative data were mixed using a triangulation exercise. MAIN OUTCOME MEASURES: Feasibility of recruiting 40 participants in 6 months, participant and therapist views on the acceptability of the intervention and research protocols, clinical outcomes including NSAA, independent assessment of treatment optimisation and intervention costs. RESULTS: Over 6 months, 348 children were screened - most lived too far from centres or were enrolled in other trials. Twelve (30% of target) were randomised to AT (n = 8) or control (n = 4). People in the AT (n = 8) and control (n = 2: attrition because of parental report) arms contributed outcome data. The mean change in NSAA score at 6 months was -5.5 [standard deviation (SD) 7.8] for LBT and -2.8 (SD 4.1) in the AT arm. One boy suffered pain and fatigue after AT, which resolved the same day. Physiotherapists and parents valued AT and believed that it should be delivered in community settings. The independent rater considered AT optimised for three out of eight children, with other children given programmes that were too extensive and insufficiently focused. The estimated NHS costs of 6-month service were between £1970 and £2734 per patient. LIMITATIONS: The focus on delivery in hospitals limits generalisability. CONCLUSIONS: Neither a full-scale frequentist randomised controlled trial (RCT) recruiting in the UK alone nor a twice-weekly open-ended AT course delivered at tertiary centres is feasible. Further intervention development research is needed to identify how community-based pools can be accessed, and how families can link with each other and community physiotherapists to access tailored AT programmes guided by highly specialised physiotherapists. Bayesian RCTs may be feasible; otherwise, time series designs are recommended. TRIAL REGISTRATION: Current Controlled Trials ISRCTN41002956. FUNDING: This project was funded by the National Institute for Health Research (NIHR) Health Technology Assessment programme and will be published in full in Health Technology Assessment; Vol. 21, No. 27. See the NIHR Journals Library website for further project information

LEARN 2 MOVE 7-12 years: a randomized controlled trial on the effects of a physical activity stimulation program in children with cerebral palsy

<p>Abstract</p> <p>Background</p> <p>Regular participation in physical activities is important for all children to stay fit and healthy. Children with cerebral palsy have reduced levels of physical activity, compared to typically developing children. The aim of the LEARN 2 MOVE 7-12 study is to improve physical activity by means of a physical activity stimulation program, consisting of a lifestyle intervention and a fitness training program.</p> <p>Methods/Design</p> <p>This study will be a 6-month single-blinded randomized controlled trial with a 6-month follow up. Fifty children with spastic cerebral palsy, aged 7 to 12 years, with Gross Motor Function Classification System levels I-III, will be recruited in pediatric physiotherapy practices and special schools for children with disabilities. The children will be randomly assigned to either the intervention group or control group. The children in the control group will continue with their regular pediatric physiotherapy, and the children in the intervention group will participate in a 6-month physical activity stimulation program. The physical activity stimulation program consists of a 6-month lifestyle intervention, in combination with a 4-month fitness training program. The lifestyle intervention includes counseling the child and the parents to adopt an active lifestyle through Motivational Interviewing, and home-based physiotherapy to practise mobility-related activities in the daily situation. Data will be collected just before the start of the intervention (T0), after the 4-month fitness training program (T4), after the 6-month lifestyle intervention (T6), and after six months of follow-up (T12). Primary outcomes are physical activity, measured with the StepWatch Activity Monitor and with self-reports. Secondary outcomes are fitness, capacity of mobility, social participation and health-related quality of life. A random coefficient analysis will be performed to determine differences in treatment effect between the control group and the intervention group, with primary outcomes and secondary outcomes as the dependent variables.</p> <p>Discussion</p> <p>This is the first study that investigates the effect of a combined lifestyle intervention and fitness training on physical activity. Temporary effects of the fitness training are expected to be maintained by changes to an active lifestyle in daily life and in the home situation.</p> <p>Trial registration</p> <p>This study is registered in the Dutch Trial Register as NTR2099.</p