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Involving Individuals with Developmental Language Disorder and Their Parents/Carers in Research Priority Setting
Published on: June 6, 2020
Harnessing real-life experiences: the development of guidelines to communicate research findings on Developmental
Catherine Purcell1,2, Annie Dahl3, Judith Gentle4
1School of Healthcare Sciences, Cardiff University, Cardiff, UK. PurcellC2@cardiff.ac.uk.
Insights
Developmental Coordination Disorder (DCD) research is often inaccessible. A new DCD Research Advisory Group created a repository for research summaries to improve understanding and accessibility for the public and professionals.
Area of Science:
- Neuroscience
- Developmental Psychology
- Public Health
Background:
- Developmental Coordination Disorder (DCD), or dyspraxia, affects 5-15% of school-aged children, impacting motor skills, academics, and quality of life.
- DCD's prevalence is higher than autism spectrum disorder, yet awareness remains low due to inaccessible research findings.
- Motor deficits associated with DCD persist into adulthood, affecting motor, emotional, and behavioral status.
Discussion:
- The DCD-UK committee formed a DCD Research Advisory Group (DCD-RAG) to address research inaccessibility.
- The DCD-RAG identified issues with research dissemination and the need for a central repository for accessible summaries.
- Co-created guidelines for authors and a review process were established for the repository.
Key Insights:
- A new, non-academic repository for DCD research summaries has been launched on the Movement Matters website.
- The repository aims to make research findings readily accessible to the public, community members, and professionals.
- This initiative seeks to increase a broader understanding of evidence-based practices for DCD.
Outlook:
- Future efforts should focus on continued community involvement in research design and dissemination.
- Expanding the repository's reach through social media and email lists will be crucial for wider impact.
- Enhanced accessibility of DCD research can lead to improved support and interventions for affected individuals.
Abstract:
Developmental Coordination Disorder (DCD), also known as dyspraxia, affects 5-15% of school-aged children (Hamilton and Sutton, Am Fam Physician 66:1435, 2002) and significantly impacts a child's ability to learn motor skills and perform everyday activities efficiently and effectively (Zwicker et al., Eur J Paediatr Neurol 16:573-81, 2012). These motor deficits can have a negative impact on academic performance, vocational choices and leisure pursuits (Zwicker et al., Eur J Paediatr Neurol 16:573-81, 2012) and profoundly impact quality of life (Izadi-Najafabadi et al., Res Dev Disabil 84:75-84, 2019). DCD persists into adulthood (Kirby et al., J Adult Dev 18:107-13, 2011), impacting motor as well as emotional and behavioural status (Tal Saban and Kirby, Curr Dev Disord Rep 5:9-17, 2018). Despite the continued increase in research in the field of DCD, awareness of DCD remains poor (O'Kelly NL., From invisibility to invincibility: Guidelines for supporting families through the diagnosis and journey with developmental coordination disorder, 2012) even though it has higher prevalence rates when compared to, for example, autism spectrum disorder (Yan et al., J Autism Dev Disord :1-7, 2024), which in part may be due to a lack of accessible research findings. A fundamental feature of the research process is disseminating research findings. This should involve community members in design and delivery to ensure the accessibility of research findings.In 2022 the DCD-UK committee established a DCD Research Advisory Group (DCD-RAG) which met over the course of 12 months to: (1) identify issues of inaccessible research findings; (2) determine the need for a repository for research summaries; (3) co-create guidelines for authors and (4) agree a process for reviewing research summaries to be housed on the Movement Matters website. The new co-produced research repository, author guidelines and process were launched at the DCD-UK conference in Manchester 2023 and subsequently shared on social media and through the DCD research email list. The creation of the DCD-RAG and the process that we undertook together to create a non-academic repository for DCD research summaries are described. It is hoped that this repository will enable the wider public, community members and professionals to be able to readily benefit from accessible research, increasing a deeper and broader understanding of the evidence in the field.
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