Anthropometry and physical appearance can be associated with quality of life in Brazilian women with Turner syndrome

ABSTRACT Objective: This study aimed to analyze if anthropometric factors and physical appearance are associated to QoL in Turner syndrome (TS). Materials and methods: Observational, analytical, and cross-sectional study. The SF-36 was applied along with an additional questionnaire regarding specific characteristics of TS. Results: There were no differences in quality of life (QoL) in TS women regarding median height and appropriate height according to parental target height, however, participants satisfied and who did not desire to change their height had better scores in the mental health and role emotional domains than those not satisfied and desired to change it. When comparing participants who were or were not bothered by physical appearance, the results showed that those not bothered by physical appearance had a better score in the vitality and social function domains. Considering patients who did or did not desire to change physical appearance, those who did not want to change their physical appearance had higher scores in the mental component and in the social function and mental health domains of the SF-36. Conclusion: This study indicated that anthropometric factors and physical appearance may possibly be associated to QoL in TS, and also emphasizes the need to develop and validate an official questionnaire regarding specific TS characteristics in order to assess in more detail how specific characteristics of TS interfere with their QoL.

The professionals' perceptions about the MOVE(r) curriculum approach / Las percepciones de los profesionales sobre el abordaje del programa MOVE(r) / As percepções dos profissionais sobre a abordagem do Protocolo MOVE(r)

Classically, in Brazil, children with severe neurological impairment have been submitted to intervention methods focused on the improvement of the overall development in controlled clinical environments. However, it has been questioned if the isolated clinical treatment results in important gains in the child's performance in various environments (home, school, community). The Mobility Opportunities Via Education (MOVE(r)) program is a functional approach designed to assess and treat children with severe disabilities. The objective of this study was to understand the perception of the teachers and assistants regarding the MOVE(r) approach in a special education school in the city of Paulínia (SP). This research is a result of a qualitative case study conducted by using semi-structured interviews and categorical data analysis. With the application of the MOVE(r) program in the school, the professionals started having a more human view while taking care of the patients. The importance of motor learning in natural environments, more motivation in the children and improvement in their motor development were emphasized. MOVE(r) was efficient in the perception of the professionals, favoring more motivation in the children and a more human approach with children with motor disabilities.

Clásicamente, en Brasil, niños con disfunciones neurológicas graves vienen someténdose a métodos de intervención orientados a mejorar el desarrollo general en entornos clínicos controlados. Se cuestiona, sin embargo, si el tratamiento clínico de forma aislada aporta beneficios significativos a las habilidades del niño en sus diferentes ambientes (hogar, escuela y comunidad). El Programa Mobility Opportunities Via Education (MOVE(r)) es un abordaje de evaluación y tratamiento funcional para niños con trastornos severos. El objetivo de este estudio fue comprender la percepción de los profesores y monitores en cuanto al uso del abordaje del MOVE(r) en una escuela de educación especial en la ciudad de Paulinia (SP). Esta investigación es el resultado de un estudio de caso cualitativo realizado por medio de entrevistas semi-estructuradas y análisis de datos categóricos. Con la implementación del MOVE(r) en la escuela, los profesionales comenzaron a tener una visión más humanitaria en el trato de los pacientes. Se hizo hincapié en la importancia de promover el aprendizaje motor en ambientes naturales, mayor motivación en los niños y mejora del desarrollo motor de estos. El MOVE(r) fue eficaz desde la percepción de los profesionales, lo que favoreció mayor motivación de los niños y un enfoque más humanitario con niños con disfunciones motoras.

Classicamente, no Brasil, crianças com disfunções neurológicas severas vêm se submetendo a métodos de intervenção focados na melhora do desenvolvimento global em ambientes clínicos controlados. Questiona-se, entretanto, se o tratamento clínico de maneira isolada traz ganhos significativos às habilidades da criança em seus diversos ambientes (casa, escola e comunidade). O Programa Mobility Opportunities Via Education (MOVE(r)) é uma abordagem de avaliação e tratamento funcional para crianças com disfunções severas. O objetivo deste estudo foi compreender a percepção dos professores e monitores referente à utilização da abordagem do MOVE(r) em uma escola de educação especial na cidade de Paulínia (SP). Esta pesquisa é resultado de um estudo de caso qualitativo realizado por meio de entrevistas semiestruturadas e análise categorial dos dados. Com a aplicação do MOVE(r) na escola, os profissionais começaram a ter uma visão mais humanitária ao lidar com os pacientes. Enfatizou-se a importância da promoção do aprendizado motor em ambientes naturais, maior motivação nas crianças e melhora do desenvolvimento motor destas. O MOVE(r) mostrou-se eficaz na percepção dos profissionais, favorecendo maior motivação das crianças e uma abordagem mais humanitária com crianças portadoras de disfunções motoras.