Parental management of developmental coordination disorder: Validation of a French translation of the Parental Knowledge and Skills Questionnaire

Abstract : Background: Best practices in Developmental Coordination Disorder (DCD) recommend building parental capacities to enhance children’s functioning but few outcome measures are available to document the impact of such interventions. The Parent Knowledge and Skills Questionnaire (PKSQ) is a valid instrument currently only available in English evaluating parental perception of their ability to manage their child, understand DCD’s impact and use knowledge about DCD. The aim of the study was to translate the PKSQ in French and assess the factor structure consistency between the French and English versions. Methods: PKSQ was translated in French using a back-translation method. Parents of children with DCD were recruited in collaboration with the DCD association and rehabilitation centers. Parents completed the questionnaire online (n = 99). Confirmatory factor analysis was conducted based on the questionnaire response data and estimated item-domain correlations were compared with the English version. Results: All items of the original PKSQ were culturally appropriate in the Quebec French context and were thus included in the final version (n = 22). The French questionnaire version showed overall good consistency with the English version. The frequency of statistically inferior item-domain correlations was consistent with the expected rate of 5% under the no difference assumption (3/22, 95% confidence interval: 3% to 35%). Items showed moderate to large correlations with their underlying construct (estimated item-domain correlations between 0.45-0.91). Conclusions: Results suggest the French version of the PKSQ is consistent with the 3-factor structure of the English version, and may now be used to evaluate interventions based on DCD best practices

Evaluation of a web platform aiming to support parents having a child with developmental coordination disorder : a randomized pilot trial

Introduction : Le trouble développemental de la coordination (TDC) a un impact significatif dans l’ensemble des sphères de la vie de l’enfant (ex : habillage, écriture, sports). Les meilleures pratiques en réadaptation recommandent d’outiller les parents pour maximiser le fonctionnement de leur enfant. Cependant, peu de services leur sont offerts. Comme les parents utilisent souvent le web pour chercher des informations et du soutien pour leur enfant, des services dispensés via internet pourraient répondre à leurs besoins. Le but de l’étude était de documenter les effets d’une plateforme web en réadaptation pour soutenir les parents d’enfant de 5 à 12 ans présentant un diagnostic ou une hypothèse de TDC. Méthodologie : Dans le cadre d’une étude randomisée pilote, les parents du groupe intervention (n=15) ont eu accès à une plateforme web incluant une page de ressources, un forum animé par une ergothérapeute, une messagerie privée et la possibilité d’échange virtuel avec l’ergothérapeute. Les parents du groupe témoin (n=13) ont eu accès seulement à la page de ressources web. Les tests non paramétriques de U-Mann Whitney et des rangs signés de Wilcoxon ont été utilisés pour documenter l’effet de la plateforme sur la perception des parents de leurs connaissances et compétences quant au TDC (variable principale), le sentiment de compétence parental, les forces et faiblesses de l’enfant, ainsi que sa compétence occupationnelle. Résultats : L’ensemble des variables évaluées se sont améliorées dans le temps pour le groupe intervention, mais ces changements n’étaient pas cliniquement ou statistiquement significatifs (p=0,08-0,41). Le seul changement statistiquement significatif était l’amélioration des connaissances et compétences des parents dans le groupe témoin (p= 0,04). Les analyses intergroupes n’ont pas détecté de différence significative entre les groupes (p=0,20-0,86). Conclusion : Les résultats pilotes n’ont pas démontré l’efficacité de la plateforme web visant à soutenir les parents d’enfants ayant un TDC. Les constats émanant de la présente étude permettront d’améliorer la plateforme web pour soutenir les parents d’enfants ayant des difficultés motrices. Cette plateforme web fera l’objet de futures études qui exploreront de nouvelles variables et outils d’évaluation afin de documenter son efficacité.Abstract: Introduction: Developmental coordination disorder (DCD) has a significant impact on all spheres of children's lives (e.g., dressing, writing, sports). Best practices in rehabilitation suggest supporting parents to maximize children’s functioning. Yet, few services are offered for families of children with DCD. Since parents often use the web to search for information and support for their children, services offered online could respond to their needs. The aim of this study was to document the effects of a web platform aiming at supporting parents of children aged from 5 to 12 years old with suspicion or diagnosis of DCD. Methodology: In this randomized pilot study, parents in the intervention group (n=15) had access to a web platform including an informational resource page, a forum moderated by an occupational therapist, a private chat and a videoconference system managed by the occupational therapist. Parents in the control group (n=13) only had access to the informational resource page. Nonparametric U-Mann Whitney and Wilcoxon signed rank test were used to document the effect of the web platform on parent’s knowledge and skills about DCD (primary outcome), parenting sense of competence, child’s strength and difficulties and child’s occupational performance. Results: All outcome improved over time for the intervention group. However, none of these improvements reached clinical or statistical significance (p=0,08-0,41). The only significant statistical change was for parents’ knowledge and skills in the control group (p=0,04). No significant difference was found for pre-post change between group (p=0,20-0,86). Conclusion: The pilot results did not demonstrate the effectiveness of web platforms supporting parents of children with DCD. Learning in this study will enable improvement of the web platform to support parents of children with motor delay. This web platform will be the subject of future studies that will explore new variables and assessment tools to evaluate its effectiveness

Participation in Activities Fostering Children’s Development and Parental Concerns about Children’s Development: Results from a Population-Health Survey of Children Aged 0–5 Years in Quebec, Canada

Abstract : This study aims to: (1) describe children’s participation in activities fostering their development, (2) document parental concerns about their children’s development, and (3) explore the influences of family characteristics on children’s activity participation and parental concerns. We conducted a phone survey with parents of children aged 0-5 years (n = 895). Survey results are presented as weighted proportions for the parent's age, sex, and area of residence. Statistical comparisons were made using chi-square with p < 0.05. Most children were exposed at least weekly to fine motor (85.1% ± 2.4%), physical (83.0% ± 2.5%), and reading (84.2% ± 2.4%) activities. However, only a small proportion were exposed to those activities daily (49.7% ± 3.3%, 35.4% ± 3.2%, and 32.4% ± 3.1% respectively). Many (46.8%) parents had concerns about their children’s development. The most frequent domains of concern were communication skills (22.8% ± 2.8%), affective and behaviour skills (22.1% ± 2.7%), and autonomy (19.6% ± 2.6%). The proportion of parents having concerns was higher among families with lower incomes. The small proportion of children exposed daily to activities fostering their development, and the high proportion of parents with concerns about their children’s development are alarming. The integration of health and education services and the use of best practices fostering children’s development at home, at school, and in daycare centres is needed

Evaluation of a web platform aiming to support parents having a child with developmental coordination disorder: Brief report

Abstract: Objective To explore the effects of a web platform, aiming to support parents of children with developmental coordination disorder (DCD), on parental knowledge and skills. Method A randomized pilot trial was undertaken (Clinical trial XX). Parents of children 5-12 years old with suspected or diagnosed DCD were recruited. The intervention group (n=15) had access to a web platform (including resources, forum and virtual interactions) for three months. The control group (n=13) only had access to resources. The primary outcome was measured pre- and postintervention with the Parent Knowledge and Skills Questionnaire. Pre- post-questionnaires evaluated secondary outcomes (parents’ sense of competence, children’s strenghts and difficulties, and children’s occupational performance). Results and discussion All outcome measures improved over time for families of the intervention group. However, those improvements were not statistically significant. Conclusion Web platforms supporting parents of children with DCD are promising and need further evaluation

Diversity of practices in telerehabilitation for children with disabilities and effective intervention characteristics: results from a systematic review

Abstract : Purpose: To describe the characteristics and effectiveness of pediatric telerehabilitation interventions offered to children 0–12 years old or to their families. Methods: A systematic review was conducted on randomized control trials published between 2007 and 2018 involving at least one rehabilitation professional who provided services remotely. Information was extracted about key study, participants and intervention characteristics. The percentage of outcomes that improved were computed per study, and per intervention characteristic. Results: Out of 4472 screened articles, 23 were included. Most studies were published after 2016 and evaluated outcomes related to the child’s behavior (n = 12, 52.2%) or to the parent (n = 10, 43.5%), such as parental skills or stress. Overall, 56.1% (SD: 38.5%) of evaluated outcomes improved following telerehabilitation. A great diversity of population and teleintervention characteristics was observed. Effective interventions tended to target parents, centered around an exercise program, used a coaching approach, focused on improving children’s behavioral functioning, lasted >8 weeks and were offered at least once a week. Conclusions: Intervention characteristics that appear to yield better outcomes should inform the development of future telerehabilitation studies, especially in populations for whom telerehabilitation is currently understudied (e.g., children’s with physical functioning difficulties). Future trials should compare telerehabilitation interventions to well-described evidence-based face-to-face interventions, and document their cost-effectiveness

Recruitment, use, and satisfaction with a web platform supporting families of children with suspected or diagnosed developmental coordination disorder: A randomized feasibility trial

Objectives. To determine the feasibility of recruiting families of children with suspected or diagnosed developmental coordination disorder (sdDCD) and explore their satisfaction with a web-based intervention Design. A feasibility randomized trial was conducted. Participants were the parents of 5-12-year-old children with sdDCD. The intervention group had access to online resources, group and private forums, and videoconferencing with a therapist. Main outcomes were recruitement and retention rates. Satisfaction was documented through a post-intervention survey and interview. Results. The recruitment rate was seven participants per month (n = 28 participants) and retention rate was 68%. Satisfaction was moderate. No differences in use and satisfaction were observed between groups. Participants formulated recommendations for improving the intervention, including targeting families earlier in the diagnosis process, and pre-scheduling meetings with therapists. Conclusions. This study demonstrated the feasibility of future trials, and highlighted avenues for improvement. Parent involvement during the development of the intervention is discussed at length. Abbreviations: DCD: Developmental Coordination Disorder; sdDCD: suspected or diagnosed Developmental Coordination Disorder; RCT: randomized-controled trial

Participation in Activities Fostering Children’s Development and Parental Concerns about Children’s Development: Results from a Population-Health Survey of Children Aged 0–5 Years in Quebec, Canada

This study aims to: (1) describe children&rsquo;s participation in activities fostering their development, (2) document parental concerns about their children&rsquo;s development, and (3) explore the influences of family characteristics on children&rsquo;s activity participation and parental concerns. We conducted a phone survey with parents of children aged 0-5 years (n = 895). Survey results are presented as weighted proportions for the parent&rsquo;s age, sex, and area of residence. Statistical comparisons were made using chi-square with p &lt; 0.05. Most children were exposed at least weekly to fine motor (85.1% &plusmn; 2.4%), physical (83.0% &plusmn; 2.5%), and reading (84.2% &plusmn; 2.4%) activities. However, only a small proportion were exposed to those activities daily (49.7% &plusmn; 3.3%, 35.4% &plusmn; 3.2%, and 32.4% &plusmn; 3.1% respectively). Many (46.8%) parents had concerns about their children&rsquo;s development. The most frequent domains of concern were communication skills (22.8% &plusmn; 2.8%), affective and behaviour skills (22.1% &plusmn; 2.7%), and autonomy (19.6% &plusmn; 2.6%). The proportion of parents having concerns was higher among families with lower incomes. The small proportion of children exposed daily to activities fostering their development, and the high proportion of parents with concerns about their children&rsquo;s development are alarming. The integration of health and education services and the use of best practices fostering children&rsquo;s development at home, at school, and in daycare centres is needed

Evaluation of a web platform aiming to support parents having a child with developmental coordination disorder : a randomized pilot trial

Introduction : Le trouble développemental de la coordination (TDC) a un impact significatif dans l’ensemble des sphères de la vie de l’enfant (ex : habillage, écriture, sports). Les meilleures pratiques en réadaptation recommandent d’outiller les parents pour maximiser le fonctionnement de leur enfant. Cependant, peu de services leur sont offerts. Comme les parents utilisent souvent le web pour chercher des informations et du soutien pour leur enfant, des services dispensés via internet pourraient répondre à leurs besoins. Le but de l’étude était de documenter les effets d’une plateforme web en réadaptation pour soutenir les parents d’enfant de 5 à 12 ans présentant un diagnostic ou une hypothèse de TDC. Méthodologie : Dans le cadre d’une étude randomisée pilote, les parents du groupe intervention (n=15) ont eu accès à une plateforme web incluant une page de ressources, un forum animé par une ergothérapeute, une messagerie privée et la possibilité d’échange virtuel avec l’ergothérapeute. Les parents du groupe témoin (n=13) ont eu accès seulement à la page de ressources web. Les tests non paramétriques de U-Mann Whitney et des rangs signés de Wilcoxon ont été utilisés pour documenter l’effet de la plateforme sur la perception des parents de leurs connaissances et compétences quant au TDC (variable principale), le sentiment de compétence parental, les forces et faiblesses de l’enfant, ainsi que sa compétence occupationnelle. Résultats : L’ensemble des variables évaluées se sont améliorées dans le temps pour le groupe intervention, mais ces changements n’étaient pas cliniquement ou statistiquement significatifs (p=0,08-0,41). Le seul changement statistiquement significatif était l’amélioration des connaissances et compétences des parents dans le groupe témoin (p= 0,04). Les analyses intergroupes n’ont pas détecté de différence significative entre les groupes (p=0,20-0,86). Conclusion : Les résultats pilotes n’ont pas démontré l’efficacité de la plateforme web visant à soutenir les parents d’enfants ayant un TDC. Les constats émanant de la présente étude permettront d’améliorer la plateforme web pour soutenir les parents d’enfants ayant des difficultés motrices. Cette plateforme web fera l’objet de futures études qui exploreront de nouvelles variables et outils d’évaluation afin de documenter son efficacité.Abstract: Introduction: Developmental coordination disorder (DCD) has a significant impact on all spheres of children's lives (e.g., dressing, writing, sports). Best practices in rehabilitation suggest supporting parents to maximize children’s functioning. Yet, few services are offered for families of children with DCD. Since parents often use the web to search for information and support for their children, services offered online could respond to their needs. The aim of this study was to document the effects of a web platform aiming at supporting parents of children aged from 5 to 12 years old with suspicion or diagnosis of DCD. Methodology: In this randomized pilot study, parents in the intervention group (n=15) had access to a web platform including an informational resource page, a forum moderated by an occupational therapist, a private chat and a videoconference system managed by the occupational therapist. Parents in the control group (n=13) only had access to the informational resource page. Nonparametric U-Mann Whitney and Wilcoxon signed rank test were used to document the effect of the web platform on parent’s knowledge and skills about DCD (primary outcome), parenting sense of competence, child’s strength and difficulties and child’s occupational performance. Results: All outcome improved over time for the intervention group. However, none of these improvements reached clinical or statistical significance (p=0,08-0,41). The only significant statistical change was for parents’ knowledge and skills in the control group (p=0,04). No significant difference was found for pre-post change between group (p=0,20-0,86). Conclusion: The pilot results did not demonstrate the effectiveness of web platforms supporting parents of children with DCD. Learning in this study will enable improvement of the web platform to support parents of children with motor delay. This web platform will be the subject of future studies that will explore new variables and assessment tools to evaluate its effectiveness

Web-based early intervention for children with motor difficulties aged 3–8 years old using multimodal rehabilitation (WECARE): protocol of a patient-centred pragmatic randomised trial of paediatric telerehabilitation to support families

Introduction Mild motor difficulties in children are underdiagnosed despite being highly prevalent, leaving such children often underserved and at higher risk for secondary consequences such as cardiovascular disease and anxiety. Evidence suggests that early patient-oriented interventions, coaching parents and providing children with early stimulation should be provided, even in the absence of a diagnosis. Such interventions may be effectively delivered via telerehabilitation.Methods and analysis A family-centred, pragmatic randomised controlled trial will be carried out to evaluate the real-world effectiveness of a Web-based Early intervention for Children using multimodAl REhabilitation (WECARE). Families of children with motor difficulties, 3–8 years of age, living in Quebec, Canada, and receiving no public rehabilitation services (n=118) will be asked to determine up to 12 performance goals, evaluated using the Canadian Occupational Performance Measure (COPM, the primary outcome). Families will be randomised to receive either usual care or the WECARE intervention. The WECARE intervention will be delivered for 1 year via a web-based platform. Families will have access to videoconferences with an assigned rehabilitation therapist using a collaborative coaching approach, a private chat function, a forum open to all intervention arm participants and online resources pertaining to child development. Participants will be asked to re-evaluate the child’s COPM performance goals every 3 months up to 1 year post allocation. The COPM results will be analysed using a mixed Poisson regression model. Secondary outcomes include measures of the child’s functional ability, parental knowledge and skills and health-related quality of life, as well as qualitative outcomes pertaining to parental satisfaction and service delivery trajectories. Investigators and quantitative data analysts will be blinded to group allocation.Ethics and dissemination The CIUSSS de l’Estrie—CHUS ethics committee approved this trial (2020-3429). Study results will be communicated via peer-reviewed journal publications, conference presentations and stakeholder-specific knowledge transfer activities.Trial registration number NCT04254302

Exploring engagement in a virtual community of practice in pediatric rehabilitation: who are non-users, lurkers, and posters?

Abstract : Purpose: Communities of practice are increasingly recognized in rehabilitation as useful knowledge transfer tools; however, little is known about their users. This exploratory study describes the characteristics of participants and non-participants invited to engage in a pediatric rehabilitation virtual community of practice. In addition, we explored virtual community of practice utilization behaviours, engagement predictors, and the impact of strategies designed to foster engagement. Materials & Methods: Participant demographics including information-seeking style and organization e-readiness, as well as online platform frequency of use data were collected and analyzed using descriptive, comparative, and predictive statistics. Results: Seventy-four percent of those invited used the virtual community of practice. Users had less years of experience in pediatric rehabilitation than non-users. Among the users, 71% were classified as ‘lurkers’, who engaged through reading content only; while 29% were classified as ‘posters’, editing online content. Predictive factors were not uncovered, however an increased number of forum visits correlated with being a poster, a non-information seeker, an employee of an organization demonstrating e-readiness, and regularly working with children with the virtual community of practice specific condition. User-engagement strategies increased visits to the forum. Conclusion: These findings will assist rehabilitation leaders in leveraging rehabilitation-specific virtual community of practice to improve knowledge transfer and practice in pediatric rehabilitation and disability management