Impacto del periodo de confinamiento por la pandemia COVID-19 en España sobre la salud y la atención recibida por los niños, niñas y jóvenes con discapacidad originada en la infancia / The impact of COVID-19 lockdown on the health and care of children and adolescents with a childhood-onset disability

Introducción Durante el periodo inicial del confinamiento por la COVID-19 se tomaron una serie de medidas de restricción que modificaron el día a día de la población. En este estudio se buscó conocer el impacto de este periodo en la salud física y mental de niños y jóvenes con discapacidad originada en la infancia, y de sus familias, y describir los cambios que se produjeron en el acceso a la educación y a los servicios de salud. Material y métodos Se realizó un estudio analítico observacional y transversal. Los datos se obtuvieron mediante una encuesta electrónica a través de una plataforma online realizada por la Academia Europea de Discapacidad Infantil. La encuesta incluyó preguntas sobre cuatro bloques temáticos: características sociodemográficas y de salud, impacto del confinamiento en la salud y bienestar, acceso a la educación y a los servicios de salud. Resultados Se obtuvieron 145 respuestas. El 45,5% de los niños y jóvenes eran totalmente dependientes. Se percibió un impacto sobre su salud física (54,5%), mental (47,6%) y sobre ambas (32%), mayores niveles de estrés (68,3%) y problemas de sueño (41,4%), así como una sobrecarga muy elevada en el 84,8% de los progenitores, sobre todo en familias de niños con mayor nivel de dependencia (p<0,001). El 55% de los niños y jóvenes no recibieron ningún tratamiento durante este periodo, ni siquiera remoto. Conclusiones El confinamiento afectó en gran medida la salud física y mental, así como a los servicios recibidos por los niños y jóvenes con discapacidad y sus familias (AU)

Introduction During the initial period of COVID-19 lockdown, restriction measures modified the day-to-day life of the population. This study sought to know the impact of this period on the physical and mental health of children and young people with disabilities originating in childhood, and their families, and to describe the changes that occurred in access to education and health services. Material and methods An observational and cross-sectional analytical study was carried out. The data were obtained by means of an electronic survey through an online platform carried out by the European Academy of Childhood Disability. The survey included questions on four thematic blocks: sociodemographic and health characteristics, impact of lock down on health and well-being, and access to education and health services. Results One hundred and forty-five responses were obtained. 45.5% of the children and young people were totally dependent. There was an impact on their physical (54.5%), mental health (47.6%) and both (32%), higher levels of stress (68.3%), and sleep problems (41.4%), as well as a high burden in 84.8% of parents, especially in families of children with a higher level of dependency (P=.00). 55% of children and young people did not receive any treatment during this period, not even remotely. Conclusions COVID lock down period greatly affected physical and mental health, as well as the services for children and young people with disabilities and their families (AU)

The use of night orthoses in cerebral palsy treatment: sleep disturbance in children and parental burden or not?

In this study, we investigated whether (1) children with cerebral palsy (CP) using night orthoses experience more sleep disturbance than those not using night orthoses, (2) parental personality is related to the experienced parental burden of night orthoses, and (3) parental sense of competence in the parenting role mediates the relation between parental personality and parental burden. Eighty-two Flemish children with CP (55 using/27 not using night orthoses) with a mean age of 9 years and 10 months (GMFCS level I-V) participated in this cross-sectional questionnaire study, using the Sleep Disturbance Scale (SDSC), Parenting Stress Index (PSI), Big Five Inventory (BFI) and a newly developed inventory to assess the parental burden of night orthoses. Multivariate analysis of covariance revealed no statistical significant differences in sleep disturbance between children using/not using night orthoses. These findings are positive as the use of night orthoses are presumed to be important in providing adequate postural care in children with CP. Extraverted and emotionally stable parents experienced less parental burden. Mediation analysis revealed that parental sense of competence partially mediated the relation between parental personality and the parental burden. These results suggest that integrating parental sense of competence in treatment programs can improve the understanding of experienced burden. Implications of such integrations for therapy are discussed.

Rating scales for dystonia in cerebral palsy: reliability and validity.

AIM: This study investigated the reliability and validity of the Barry-Albright Dystonia Scale (BADS), the Burke-Fahn-Marsden Movement Scale (BFMMS), and the Unified Dystonia Rating Scale (UDRS) in patients with bilateral dystonic cerebral palsy (CP). METHOD: Three raters independently scored videotapes of 10 patients (five males, five females; mean age 13 y 3 mo, SD 5 y 2 mo, range 5-22 y). One patient each was classified at levels I-IV in the Gross Motor Function Classification System and six patients were classified at level V. Reliability was measured by (1) intraclass correlation coefficient (ICC) for interrater reliability, (2) standard error of measurement (SEM) and smallest detectable difference (SDD), and (3) Cronbach's alpha for internal consistency. Validity was assessed by Pearson's correlations among the three scales used and by content analysis. RESULTS: Moderate to good interrater reliability was found for total scores of the three scales (ICC: BADS=0.87; BFMMS=0.86; UDRS=0.79). However, many subitems showed low reliability, in particular for the UDRS. SEM and SDD were respectively 6.36% and 17.72% for the BADS, 9.88% and 27.39% for the BFMMS, and 8.89% and 24.63% for the UDRS. High internal consistency was found. Pearson's correlations were high. Content validity showed insufficient accordance with the new CP definition and classification. INTERPRETATION: Our results support the internal consistency and concurrent validity of the scales; however, taking into consideration the limitations in reliability, including the large SDD values and the content validity, further research on methods of assessment of dystonia is warranted.