Mysteries and Mazes: Parents' Experiences of Children with Developmental Coordination Disorder

Missiuna, Cheryl; Moll, Sandra; Law, Mary; King, Susanne; King, Gillian

doi:10.2182/cjot.05.0010

Cited by 122 publications

(179 citation statements)

References 14 publications

(23 reference statements)

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“…Yet these concerns are not always recognized by professionals (Missiuna, Moll, Law, King, & King, 2006) and parents are sometimes (incorrectly) reassured that their child will outgrow their difficulties (Zwicker, Missiuna, Harris, & Boyd, 2012). It is not until the child enters the school system that motor problems become more pronounced (Rodger & Mandich, 2005), and a diagnosis is normally received between the ages of five and seven (Novak, Lingam, Coad, & Emond, 2012).…”

Section: Introductionmentioning

confidence: 99%

Surveying parental experiences of receiving a diagnosis of developmental coordination disorder (DCD)

Soriano

Hill

Crane

2015

Research in Developmental Disabilities

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Receiving a diagnosis of a developmental disorder has a major impact on an individual and their family. However, little is known about parental experiences of having a child diagnosed with developmental coordination disorder (DCD). In this study, 228 parents completed an online survey about their experiences of obtaining a diagnosis of DCD for their child in the United Kingdom. Results demonstrated that, on average, a diagnosis was confirmed two and a half years after parents initially sought professional help in relation to their child's motor difficulties. Satisfaction with the overall diagnostic process was mixed: 45% of parents were dissatisfied (26% = very dissatisfied, 19% =quite dissatisfied) and 39% were satisfied (16% =very satisfied, 23% = quite satisfied). Four factors were predictive of parental satisfaction with the overall diagnostic process: the stress of the diagnostic process; the manner of the diagnosing professional; satisfaction with post-diagnostic support; and the time taken to get a diagnosis. Postdiagnostic provision was the area in which parents reported most dissatisfaction; an unsurprising finding given that 43% of parents were not offered any practical help or support during the diagnostic process or in follow up appointments (although there was an indication that this was improving). Based on these findings (as well as previous research), we propose three key areas in which improvements in the diagnostic process for DCD are needed: (1) Greater awareness about DCD in order to facilitate earlier recognition; (2) Implementation of clear referral pathways, to reduce the time taken to receive a diagnosis; and (3) Increased post-diagnostic support within health and educational systems.

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Section: Introductionmentioning

confidence: 99%

Surveying parental experiences of receiving a diagnosis of developmental coordination disorder (DCD)

Soriano

Hill

Crane

2015

Research in Developmental Disabilities

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“…14 DCD programs should include pathways and coordination mechanisms to clarify stakeholders' role across the health and the education systems (Forsyth et al, 2008;Missiuna et al, 2006;Rodger and Mandich, 2005). Many pathways described in the literature begin with the identification of concerns about children with DCD by teachers (Campbell and Skarakis-Doyle, 2007;Missiuna et al, 2012a;Salmon et al, 2006).…”

Section: Discussionmentioning

confidence: 99%

“…Challenging factors include: 1) lack of recognition of DCD, resulting in families seeking assistance from multiple service providers to determine what is wrong with their child (Maciver et al, 2011;Missiuna et al, 2006;Rodger and Mandich, 2005;Stephenson and Chesson, 2008); 2) long wait times for services (Dunford et al, 2004;Peters et al, 2004) ; 3) the high prevalence of DCD which implies that many children may require services (American Psychiatric Association, 2013;Missiuna et al, 2014) and 4) children with DCD falling outside the mandate of many children's rehabilitation centers (Deloitte, 2010). Increasing professional and community awareness about DCD is leading to an increase in referrals but may not be sufficient for children to have access to timely services.…”

Section: Introductionmentioning

confidence: 99%

A Service Delivery Model for Children with DCD Based on Principles of Best Practice

Camden

Morel

Missiuna

2014

Physical & Occupational Therapy In Pediatrics

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Authors don't have any interest to declare. ACKNOWLEDGMENTSAuthors wish to acknowledge the contributions of all the families, therapists, managers and researchers involved in the development, implementation and evaluation of the Apollo service delivery model, as well as the leaders and partners of the DCD program. There are too many partners to list them all, but special thanks to the Association Québécoise de Enfants Dyspraxiques (http://www.dyspraxie-aqed.ca/) for its help in developing and sustaining the DCD program. 2 ABSTRACTThere is a general consensus that new service delivery models are needed for children with developmental coordination disorder (DCD). Emerging principles to guide service delivery include the use of graduated levels of intensity and evidence-based services that focus on function and participation. Interdisciplinary, community-based service delivery models based on best practice principles are needed. In this case report, we propose the Apollo model as an example of an innovative service delivery model for children with DCD. We describe the context that led to the creation of a program for children with DCD, describe the service delivery model and services, and share lessons learned through implementation.The Apollo model has 5 components: first contact, service delivery coordination, community-, group-and individual-interventions. This model guided the development of a streamlined set of services offered to children with DCD, including early-intake to share educational information with families, community interventions, inter-disciplinary and occupational therapy groups and individual interventions. Following implementation of the Apollo model, waiting times decreased and numbers of children receiving services increased, without compromising service quality.Lessons learned are shared to facilitate development of other practice models to support children with DCD.

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“…Physicians and rehabilitation professionals can, however, use specific interventions to increase parents' awareness of DCD and build their capacity to manage the health condition. These professionals are ideally positioned not only to provide information about DCD, but also to recognize and facilitate its diagnosis as families often consult with them about coordination difficulties, failure to develop motor skills or problematic behaviours 12,13 .…”

Section: Introductionmentioning

confidence: 99%

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

Camden

Foley

Anaby

et al. 2016

Disability and Health Journal

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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 behavioural changes when managing their child's health condition. Methods : A mixed-methods, before-after-follow-up design guided by the theory of planned behaviour was employed. Data about the knowledge, skills and behaviours of parents of children with DCD were collected using questionnaires prior to completing the module, immediately after, and three months later. One-way repeated measures ANOVAs and thematic analyses were performed on data as appropriate. Results : Fifty-eight participants completed all questionnaires. There was a significant effect of time on self-reported knowledge [F(2.00,114.00)=16.37, p=0.00] and skills [F(1.81,103.03)=51.37, p=0.00] with higher post-and follow-up scores than pre-intervention scores. Thirty-seven (65%) participants reported an intention to change behaviour post-intervention; 29 (50%) participants had tried recommended strategies at follow-up. Three themes emerged to describe parents' behavioural change: sharing information, trialing strategies and changing attitudes. Factors influencing parents' ability to implement these behavioural changes included clear recommendations, time, and 'right' attitude. Perceived outcomes associated with the parental behavioural 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 outcomes long-term. Enclosed please find the research article entitled "Using an evidence-based online module to improve parents' ability to support their child with Developmental Coordination Disorder"-for consideration by Disability and Health Journal. The article consists of a mixed-method, before-after trial with a threemonth follow-up. In this trial, parents of children with Developmental Coordination Disorder (DCD) completed an online evidence-based module providing information and strategies to manage this prevalent and potentially disabling chronic health condition. This manuscript will be of interest to your journal as the families of children with motor delays, or "suspected DCD", typically visit physicians and many other health care professionals to find out "what is wrong with their child". Previous papers have suggested that providing evidence-based information to families is a key strategy in equipping families to support their children with DCD. However, no specific intervention has been tested so far to evaluate the impact of providing information to families. This study evaluated whether an evidence-based online module could inc...

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Mysteries and Mazes: Parents' Experiences of Children with Developmental Coordination Disorder

Abstract: For occupational therapists, the study findings illustrate the importance of focusing on occupational performance issues for children with DCD, facilitating the understanding of parents, and the need for early intervention.

Cited by 122 publications

References 14 publications

Surveying parental experiences of receiving a diagnosis of developmental coordination disorder (DCD)

Surveying parental experiences of receiving a diagnosis of developmental coordination disorder (DCD)

A Service Delivery Model for Children with DCD Based on Principles of Best Practice

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

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