Harnessing real-life experiences: the development of guidelines to communicate research findings on Developmental Coordination Disorder/dyspraxia.

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.

Developmental Coordination Disorder (DCD) is also known as dyspraxia. DCD can affect a person's coordination, how they move and how they perform daily activities. It can impact quality of life and social and emotional wellbeing.Awareness of DCD is poor, so the DCD-UK committee started a Research Advisory Group, called DCD-RAG which includes adults with DCD and parents of children with DCD, to help them make information from DCD researchers more accessible.The group helped to identify the problems with gaining access to DCD research and they helped to write guidelines for researchers. They helped develop a website called Movement Matters for DCD researchers to file accessible summaries of their work. The group looked at how they could review summaries to ensure good practice.It is hoped the new website will help make DCD research from both the UK and internationally easier for the public and professionals to find, read and understand.Public involvement in research can be tokenistic. It is important that researchers allocate time to share findings with the people whose lives are the focus of the research.This article outlines how co-production with the public can improve the accessibility of research findings. Doing this in a way which is meaningful and accessible should be the minimum that researchers aim for.

Strengths and weaknesses of the MABC-2 as a diagnostic tool for developmental coordination disorder: An online survey of occupational therapists and physiotherapists.

The Movement Assessment Battery for Children-2 (MABC-2) is the most widely used instrument for aiding the diagnosis of developmental coordination disorder (DCD). Despite being shown to have strong validity and reliability, it has received criticism for aspects of its scoring system, the lack of formal training, and its susceptibility to overlook higher functioning DCD children. To aid the development of future diagnostic tools and/or iterations of the MABC-2, the present study attempted to draw upon the experience of key stakeholders and determine the strengths and weaknesses of the MABC-2. Using a short online questionnaire, occupational therapists (n = 14) and physiotherapists (n = 3) with experience using the MABC-2 for DCD diagnosis completed a series of Likert scale and free-text questions. Braun and Clarke's six-phase process to thematic analyses was used to identify main themes obtained across quantitative and qualitative data. Results indicate that whilst the MABC-2 is easy to administer and interpret, the scores can misrepresent true motor difficulties due to (a) daily variations in mental and physical state, (b) the reliance on non-functional tasks, (c) negative interference from parents, (d) changes in motor competency due to practice, and (e) a lack of formal examiner training to ensure the test is effectively lead. Further work is needed to more reliably determine how perceptions of the MABC-2 might vary across levels of expertise, profession, and cultural differences.

The brain tumor not-for-profit and charity experience of COVID-19: reacting and adjusting to an unprecedented global pandemic in the 21st century.

BACKGROUND: The Coronavirus Disease 2019 (COVID-19) pandemic has affected individuals as well as disease-specific brain tumor organizations. These organizations around the world exist to address unmet needs for patients and caregivers they serve. The direct impact of the pandemic on these organizations constitutes significant collateral damage. In order to better understand the effects of the COVID-19 pandemic on brain tumor organizations, the International Brain Tumour Alliance (IBTA) carried out an international survey to identify organizational changes induced by the virus and approaches adopted to address challenges. METHODS: A 37-question online survey consisting of categorical and qualitative questions was developed and circulated to 130 brain tumor organizations across the world. Seventy-seven organizations from 22 countries completed the survey (59% return rate). Descriptive statistics and content analysis were used to present the results. RESULTS: Responses fell into the following 3 categories: (1) organizational characteristics, (2) impact of COVID-19 on services, and (3) COVID-19 impact on financial and human resources within organizations. Although organizational characteristics varied, common concerns reported were activity disruption which impacted organizations' abilities to offer usual services and challenges to sustaining funding. Both financial and human resources were stressed, but integral adaptations were made by organizations to preserve resources during the pandemic. CONCLUSIONS: Although brain tumor organizations have been impacted by the COVID-19 pandemic, organizations quickly adjusted to this unprecedented global healthcare crisis. Nimble reactions and flexibility have been vital to organization sustainability. Innovative approaches are required to ensure organizations remain viable so that needs of brain tumor community at large are met.

Brain tumors and COVID-19: the patient and caregiver experience.

BACKGROUND: Since the COVID-19 pandemic began, thousands of medical procedures and appointments have been canceled or delayed. The long-term effects of these drastic measures on brain tumor patients and caregivers are unknown. The purpose of this study is to better understand how COVID-19 has affected this vulnerable population on a global scale. METHODS: An online 79-question survey was developed by the International Brain Tumour Alliance, in conjunction with the SNO COVID-19 Task Force. The survey was sent to more than 120 brain tumor charities and not-for-profits worldwide and disseminated to pediatric and adult brain tumor patients and caregivers. Responses were collected from April to May 2020 and subdivided by patient versus caregiver and by geographical region. RESULTS: In total, 1989 participants completed the survey from 33 countries, including 1459 patients and 530 caregivers. There were no significant differences in COVID-19 testing rates (P = .662) or positive cases for brain tumor patients between regions (P = .1068). Caregivers were significantly more anxious than patients (P ≤ .0001). Patients from the Americas were most likely to have lost their jobs due to the pandemic, practiced self-isolation, and received telehealth services (P ≤ .0001). Patients from Europe experienced the most treatment delays (P = .0031). Healthcare providers, brain tumor charities, and not-for-profits were ranked as the most trusted sources of information. CONCLUSIONS: As a result of COVID-19, brain tumor patients and caregivers have experienced significant stress and anxiety. We must continue to provide accessible high-quality care, information, and support in the age of COVID-19.

Understanding Organisational Ability and Self-Regulation in Children with Developmental Coordination Disorder.

PURPOSE OF THE REVIEW: This paper examines physical and emotional coherence in young people with developmental coordination disorder (DCD). Specifically, the transactional relationship between motor and non-motor/executive dysfunction in children with DCD and its impact on psychosocial functioning is explored. RECENT FINDINGS: This paper integrates the subjective reported experiences of young people with DCD with objective measurements and findings from neuroimaging studies. SUMMARY: Consideration of the transactional relationship between the person, the activity and the environment, whether these factors be physical, social, attitudinal or virtual, will be fundamental to our understanding of the mechanisms underpinning organisational and emotional issues presenting in DCD. Integrating the experiences of young people with research evidence will be essential to improve outcomes for young people with DCD in clinical practice.

Diferencias entre los estilos de amar que tienen hombres y mujeres y sus reacciones de Estrés Postraumático tras la ruptura de su relación

Este estudio pretendía explorar 1) las diferencias existentes entre el sexo femenino y el masculino a la hora de manifestar síntomas de estrés postraumático tras la ruptura de una relación sentimental, 2) las diferencias en el estilo de amar que presenta cada sexo durante la relación y, 3) la interacción entre el sexo, el estrés traumático y las distintas maneras de expresar el amor. Valoramos la posibilidad de que ambos sexos se diferenciaran en cuanto a los síntomas de estrés postraumático tras la ruptura de una relación así como en los estilos de amar adoptados y asimismo, consideramos la posibilidad de que existiera una interacción significativa entre el sexo, el estrés traumático y los estilos de amar. Un total de 25 hombres y 40 mujeres participaron en el estudio y fueron entrevistados con la Escala de Impacto de Acontecimientos Vitales (IES), el Cuestionario de Salud General (GHQ) y la Escala de Actitud ante el amor (LAS). Los resultados no mostraron diferencias significativas entre ambos sexos en lo que al impacto que provocaba la ruptura se refiere, sin embargo, las mujeres padecían mayor disfunción social y depresión que los hombres. Los resultados también mostraron que existían diferencias en los estilos de amor "Eros" y "Agape". A pesar de ello, no se obtuvieron resultados significativos en las relaciones existentes entre el sexo, la gravedad del estrés traumático y los estilos de amar (AU)