Eficacia de la musicoterapia para reducir la ansiedad dental en niños con discapacidad / Eficacia da musicoterapia para redução da ansiedade dental em crianças com discapacidades / Effectiveness of Music Therapy in reducing dental anxiety in children with disabilities

Objetivo: Evaluar la eficacia de la musicoterapia para la reducción de la ansiedad dental en niños entre 5 a 12 años con discapacidad durante la atención odontológica. Materiales y métodos: Estudio cuasi experimental. Se evaluaron 40 pacientes, divididos aleatoriamente en 2 grupos: grupo de expuestos y no expuestos a musicoterapia. El nivel de ansiedad fue registrado por la escala de imagen facial antes y después de la atención clínica, el comportamiento durante la atención a través de la escala de Frankl y el nivel de ansiedad de los padres a través de la escala modificada de Corah. Se registraron las funciones vitales de ambos grupos antes y después de dicha atención. El análisis de los datos se realizó análisis descriptivo (media ± desviación estándar) y análisis inferencial: Test de T-Student y Chi cuadrado (p<0,05). Resultados: Se encontró que la presión arterial inicial/ final en el grupo expuesto fue (Sístole: 108.75 ± 8.56/ 95.50 ± 6.86, Diástole: 67.75 ± 7.15 / 57.75 ± 6.38), y en el grupo no expuesto (Sístole: 101.75 ± 8.77/ 110.15 ± 13.31, Diástole: 59.20 ± 6.08) respectivamente, y la frecuencia cardiaca inicial/final en el grupo expuesto (72.30 ± 7.18 / 63.95 ± 6.12); y en el grupo no expuesto (66.50 ± 9.88 / 73.90 ± 11.46). Se encontraron diferencias estadísticamente significativas en los valores de la presión arterial (sístole, p<0,001 y diástole, p=0,007) y frecuencia cardiaca final (p=0,001), así como una reducción de los niveles de ansiedad final en el grupo expuesto a musicoterapia (p=0,001).

Objetivo:Avaliar a eficacia da musicoterapia para redução da ansiedade dental em crianças com discapacidades entre 5 a 12 anos durante o atendimento odontológico. Materiais e métodos: Estudo quase experimental. Avaliou-se 40 pacientes divididos aleatoriamente em dois grupos: grupos de expostos e não expostos a musicoterapia. O nível de ansiedade foi registrado pela escala de imagem facial antes e durante o atendimento odontológico, o comportamento durante o atendimento foi através da escala de Frankl e o nível de ansiedade dos padres através da escala modificada de Corah. As funções vitais foram registradas antes e depois do atendimento. O análises de dados foi realizado através análises descritivas (média ± ds) e análises inferenciais: Teste de T-Student e Chi Quadrado (p<0,05). Resultados: A pressão arterial inicial/final no grupo exposto foi (Sístole: 108.75 ± 8.56/95.50 ± 6.86, Diástole: 67.75 ± 7.15/ 57.75 ± 6.38), e no grupo não exposto (Sístole: 101.75 ± 8.77/110.15 ± 13.31, Diástole: 59.20 ± 6.08) respetivamente, e a frequência cardíaca inicial/final no grupo exposto (72.30 ± 7.18/ 63.95 ± 6.12); e no grupo não exposto (66.50 ± 9.88 / 73.90 ± 11.46). Se encontraram diferenças estatisticamente significativas nos valores da pressão arterial (sístole, p=0,000 e diástole, p=0,007) e frequência cardíaca final (p= 0,001), assim como na redução dos níveis de ansiedade final no grupo exposto à musicoterapia (p=0,001). Conclusão: O uso da musicoterapia diminuiu significativamente os níveis da ansiedade durante o atendimento odontológico nos pacientes com discapacidades

Objective: To evaluate the effectiveness of music therapy in reducing dental anxiety in children with disabilities between 5 and 12 years old during dental care. Materials and methods: Quasi-experimental study. 40 patients were evaluated, randomly divided into 2 groups: a group exposed to music therapy and a group not exposed to it. The levels of anxiety were registered using the Facial Image Scale before and after the dental care, the behaviour during dental care using the Frank Scale and the level of anxiety of the parents using the Modified Corah Scale. The vital functions of both groups were registered before and after the dental care. The data analysis was performed using descriptive analysis (media ± standard deviation) and inferential analysis: T- Student test and Chi square (p<0,05). Results: It was found that the initial/final blood pressure in the exposed group was (Systole: 108.75 ± 8.56/ 95.50 ± 6.86, Diastole: 67.75 ± 7.15/ 57.75 ± 6.38), and in the unexposed group (Systole: 101.75 ± 8.77/ 110.15 ± 13.31, Diastole: 59.20 ± 6.08), and the initial/final heart rate in the exposed group was (72.30 ± 7.18/ 63.95 ± 6.12); and in the unexposed group (66.50 ± 9.88/ 73.90 ± 11.46). Statistically significant differences were found in the values of blood pressure (systole, p=0,000 y diastole, p=0,007) and heart rate (p= 0,001), as well as a reduction in the levels of anxiety in the exposed group to music therapy (p=0,001). Conclusion: The use of Music therapy significantly reduces levels of anxiety during dental care in patients with disabilities.

Psychological Satisfaction of Parents of Young Football Players with a Mosaic Form of Down Syndrome by the Quality of Sports Training

Physical culture and sports are still an effective means of rehaabilitation and social integration of persons with weakened health. They allow people with disabilities to fully discover all their functional reserves and be active members of society. In this regard, the further development of physical culture and sports work with people with various health problems is very promising. One of the types of such activities are footbal groups, where children and young people with Down's syndrome are becoming more active. For athletes with a mosaic form of Down's syndrome, it is very important, first of all, that there are conditions for practicing football, that is, a gym with inventory, as evidencedby high marks to the quality of the classes. The use of visual training methods (instructions, drawings, schemes) in training improves the interaction of athletes with the coach, facilitates the assimilation of the training material and thereby increases the motor density of the session. It is clear that the personality of the coach plays the leading role in the training process. From how competently he interacts with his athletes, how attentive to the, how uch he carries them into playing sports ultimately depends the result of his activities ad the success of the students. It is also very important attention to the success of young athletes with a mosaic form of Down syndrome. Promotion of football among them and their active encouragement for sportes success is a serious incentive form their further employment in football and increases the popularity not only of this sport, but also of a healthy lifestyle (AU)

Desarrollo de habilidades comunicativas en lactantes con síndrome de Down posterior a capacitaciones sistematizadas en comunicación gestual / Development of communicative abilities in infants with Down syndrome after systematized training in gestural communication

INTRODUCCIÓN: La comunicación gestual, entendida como el uso de gestos no verbales antes de la aparición de la palabra, es una fortaleza en niños con síndrome de Down (SD). OBJETIVO: Describir conductas de desarrollo comunicativo en niños con SD, previo y posterior a capacitaciones en comunicación gestual, basadas en talleres de "Señas, palabras y juegos" del programa Baby Signs®. SUJETOS Y MÉTODO: Estudio prospectivo de niños con SD entre 18 y 22 meses de edad cognitiva, a los cuales se les realizó capacitaciones en comunicación gestual según la metodología Baby Signs, evaluando habilidades comunicativas a través del inventario McArthur adaptado para niños con SD (Inventario de desarrollo comunicativo, CDI-SD), analizando los puntajes antes y 3 meses después de la intervención. Los ítems evaluados corresponden a: Comprensión temprana, Comprensión de las primeras frases, Comenzando a hablar, Lista de vocabulario y Uso descontextualizado del lenguaje (parte 1) y a Gestos totales, tempranos y tardíos (parte 2). RESULTADOS: 21 niños completaron los talleres, con una media de edad cronológica de 27,5 meses y 19,8 meses de edad cognitiva. El 29% de los participantes aumentaron sus puntajes en comprensión de frases, el 62% en producción de vocabulario con gestos, el 33% mejora la comprensión de vocabulario, el 57% perdió los gestos tempranos y el 43% aumentó la producción de gestos tardíos. CONCLUSIONES: Las capacitaciones en comunicación gestual favorecen el desarrollo de habilidades comunicativas en un grupo de niños con SD, principalmente en la com prensión inicial y producción de gestos. Existe importante variabilidad interindividual, por lo que es necesario considerar las recomendaciones niño a niño.

INTRODUCTION: Gestural communication, understood as the use of non-verbal gestures before the word appears, is a strength in children with Down syndrome (DS). OBJECTIVE: To describe com munication development behaviors in children with DS, before and after gestural communication training, based on the "Signs, words and games" workshops of the Baby Signs® program. SUBJECTS AND METHOD: Prospective study of children with DS between 18 and 22 months of cognitive age, who were trained in gestural communication according to the "Baby Signs®" methodology, evaluating communication skills through the MacArthur inventory adapted for children with DS (Communica tive Development Inventories, CDI-DS), analyzing the scores before and three months after the in tervention. The evaluated items were: Early comprehension, First sentences comprehension, Starting to speak, Vocabulary list, and Decontextualized language use (part 1) and total, early and late gestures (part 2). RESULTS: 21 children completed the workshops, with an average chronological age of 27.5 months and 19.8 months of cognitive age. 29% of the participants increased their scores in sentence comprehension, 62% in vocabulary production with gestures, 33% improved in vocabulary compre hension, 57% lost early gestures, and 43% increased late gestures production. CONCLUSIONS: Gestural communication training favors the communication skills development in a group of children with DS, mainly in the initial understanding and gesture production. There is important inter-individual variability, therefore is necessary to consider child to child recommendations.

O Modelo Lúdico em crianças com Síndrome de Down / The Ludic Model in children with Down's Syndrome / El Modelo Lúdico en los niños con el síndrome de Down

O Modelo Lúdico é um referencial teórico para a intervenção clínica, desenvolvido por Francine Ferland, terapeuta ocupacional, que tem como foco de investigação o brincar na prática clínica com crianças com deficiência física. O objetivo do trabalho foi verificar possíveis contribuições do modelo e de autores da Psicologia para análise do brincar de crianças com Síndrome de Down. O estudo incluiu oito crianças de ambos os sexos com diagnóstico de Síndrome de Down, com idade entre seis e dez anos, além de seus responsáveis legais. As crianças apresentaram interesse principalmente por estímulos sonoros, espontaneidade e prazer ao brincar. No entanto, nem todas apresentaram senso de humor, gosto por desafios e iniciativa, demonstrando uma forma de brincar mais passiva. Foi possível caracterizar alguns aspectos e interesses da criança com Síndrome de Down no brincar, oferecendo-se subsídios para que os profissionais de educação ou da saúde possam determinar focos de intervenção.

The Ludic Model is a theoretical reference for the clinical intervention, developed by the occupational therapist Francine Ferland, whose research investigates how children with physical disabilities play in the clinical setting. The aim of the study was to determine possible contributions of the model and authors in Psychology for the analysis of how children with Down Syndrome play. The study included eight children of both sexes diagnosed with Down Syndrome, with ages between six and ten years and their legal guardians. The children demonstrated interest mainly by listening to stimuli, spontaneity and pleasure to play. However, not all of them demonstrated a sense of humour or an interest in challenges and taking initiative. They displayed more passivity while playing. It was possible to characterize some aspects and interests of the child with Down Syndrome as they played, offering assistance to education or healthcare professionals so they can then determine their intervention focuses.

El modelo lúdico es un referencial teórico para la intervención clínica, desarrollado por Francine Ferland, terapeuta ocupacional, que tiene como enfoque de investigación el jugar en la práctica clínica con niños con discapacidad física. El objetivo de este trabajo fue verificar posibles contribuciones del modelo y de autores de la Psicología para el análisis del juego de niños con Síndrome de Down. El estudio incluyó a ocho niños de ambos sexos con diagnóstico de Síndrome de Down, con edades entre seis y diez años, además de sus responsables legales. Los niños presentaron interés principalmente por estímulos sonoros, espontaneidad y placer al jugar. Sin embargo, la mayoría de ellos presentaron una forma de jugar mas pasiva, donde no demostraron sentido del humor, interés por desafíos e iniciativa. Fue posible caracterizar algunos aspectos e intereses del niño con Síndrome de Down en el juego, contribuyendo para que los profesionales de la educación o de la salud puedan determinar enfoques de intervención.

Sobrecarga dos cuidadores de crianças e adolescentes com Síndrome de Down / Burden of caregivers of children and adolescents with Down Syndrome

Resumo O objetivo foi avaliar o perfil e a sobrecarga de cuidadores de crianças/adolescentes com e sem síndrome de Down. As avaliações foram realizadas por meio dos questionários sobre o perfil e a sobrecarga dos cuidadores (Burden Interview), e o perfil das crianças/adolescentes. Estes questionários foram aplicados a 168 cuidadores. Os testes Qui-quadrado, Exato de Fisher e Análise de Variância foram empregados com nível de significância fixado em α = 5%. Ambos os grupos eram compostos por 84 participantes, e os cuidadores do grupo com deficiência apresentaram porcentagem significantemente maior para o sexo feminino (p = 0,001), faixa etária de 41-60 anos (p < 0,001), não possuíam ocupação laboral (p < 0,001), baixa renda per capita (p < 0,001), baixo nível de escolaridade (p = 0,021), religião católica (p = 0,001), maiores de problemas de saúde (p < 0,001), em uso de medicação continua (p < 0,001) e com nível de sobrecarga moderada (p < 0,001). As crianças/adolescentes com deficiência necessitavam significantemente maior auxilio para a alimentação (p = 0,051), banho (p = 0,006), vestuário (p = 0,042), controle de esfíncteres (p = 0,027) e higiene íntima (p < 0,001). Os cuidadores de crianças/adolescentes com síndrome de Down apresentam sobrecarga moderada, quando comparados à cuidadores de crianças/adolescentes normoreativas.

Abstract The aim of this study was to evaluate the profile and burden of caregivers of children/adolescents with and without Down syndrome. The evaluations were performed through questionnaires about the profile and burden of the caregivers (Zarit Burden Interview) and the profile of the children/adolescents. These questionnaires were applied to 168 caregivers. The chi-square test, Fisher's exact test, and analysis of variance were used with a significance level set at a = 5%. Both groups were composed of 84 participants, and the caregivers of the disabled group had a significantly higher percentage of females (p = 0.001), those in the 41-60 age group (p < 0.001), those who had no occupation (p < 0.001), those with a low per capita income (p < 0.001), those with a low level of schooling (p = 0.021), those who were Catholic in religion (p = 0.001), those who had more health problems (p < 0.001), those who continued the use of medication (p < 0.001), and those with a moderate level of burden (p < 0.001). The children/adolescents with disabilities needed significantly more help for eating (p = 0.051), bathing (p = 0.006), dressing (p = 0.042), sphincter control (p = 0.027), and intimate hygiene (p < 0.001). The caregivers of children/adolescents with Down syndrome presented a moderate burden compared to the caregivers of normoreactive children/adolescents.

Learning by exclusion in individuals with autism and Down syndrome

Abstract This study aimed to investigate the number of exclusion trials necessary for teaching auditory-visual relationships to individuals with autism and Down syndrome. Study participants were seven individuals with autism and a history of early behavioral intervention (EI), four adults with autism without a history of early behavioral intervention (NI), and three adults with Down syndrome. A set of procedures was used for teaching the auditory-visual matching to sample, and naming responses of the new stimuli were tested. For the individuals with autism and EI and for the individuals with Down syndrome, the required number of repetitions was stable and concentrated in the minimum programmed by the procedure (two repetitions). However, the procedure was not effective for teaching new conditional relationships for the adults with autism and NI. The results indicate that the procedure can constitute an important teaching technology; however, its efficacy appears to vary depending on the educational profile of the participant.

Habilidades funcionais e assistência do cuidador de crianças e adolescentes com síndrome de Down / Functional habilities and caregivers assistance of children and adolescents with Down syndrome

Introdução: A síndrome de Down (SD) é uma das cromossomopatias mais frequentes em todo o mundo e é a causa mais comum de deficiência intelectual.. Embora trabalhos disponibilizem evidências sobre as limitações em atividades e restrição na participação de pessoas com SD, informações sobre o impacto destas limitações na família e principalmente uma caracterização da assistência necessária pelo cuidador ainda é uma área pouco explorada, mas necessária para organizar um programa de reabilitação. Objetivo: Analisar as habilidades funcionais de crianças e adolescentes com Síndrome de Down e a assistência oferecida pelos cuidadores, o que será fundamental para organização de programas de reabilitação. Método: Trata-se de trabalho analítico, transversal em que foram entrevistados 100 pais/cuidadores de crianças e adolescentes com SD através do Inventário de Avaliação Pediátrica de Incapacidades (PEDI). As habilidade funcionais e a assistência oferecida pelos cuidadores obtidas foram distribuídas em gráficos de dispersão. Para as análises estatísticas foram utilizados os softwares MedCalc versão 16.8.4 e GraphPad Prism versão 6.07. Resultados: Crianças e adolescentes com SD necessitam maior tempo para aquisição das habilidades de auto-cuidado, mobilidade e função social, sendo mais evidente nas duas últimas. Seus pais conseguem identificar melhor suas dificuldades antes dos 8 anos e necessitam de apoio profissional especializado a partir dessa faixa etária para auxiliar o desenvolvimento das potencialidades de seus filhos. Conclusão: Os pais conseguem identificar as dificuldades de seus filhos em idades mais precoces e oferecem mais assistência, porém não ocorre o mesmo à medida que atingem a idade escolar, indicando a necessidade de apoio profissional nesse período que não se restrinja às orientações e à escola

Introduction: Down Syndrome (DS) is one of the most common chromosomal disorders worldwide and is the most common cause of intellectual disability. Although there is evidence of limitations in activities and restriction of participation in people with DS, information about the impact of these limitations on the family and especially a characterization of the care needed by the caregiver is still an unexplored but necessary area to organize a rehabilitation program. Objective: To analyze the functional abilities of children and adolescents with Down Syndrome and the care provided by caregivers, which will be fundamental for the organization of rehabilitation programs. Method: This is an analytical, transversal work in which 100 parents / caregivers of children and adolescents with DS were interviewed through the Pediatric Assessment of Disabilities Inventory (PEDI). The functional skills and care provided by the caregivers obtained were distributed in scatter plots. Statistical analyzes were performed using MedCalc software version 16.8.4 and GraphPad Prism version 6.07. Results: Children and adolescents with DS need more time to acquire the abilities of self-care, mobility and social function, being more evident in the last two. Their parents are able to better identify their difficulties before they are 8 years old and require specialized professional support from this age group to help their children\'s development. Conclusion: Parents are able to identify the difficulties of their children at a younger age and offer more assistance, but they do not do so as they reach school age, indicating the need for professional support in this period that is not restricted to guidelines and school

Experiencias en madres con hijos con síndrome de Down en torno a la recepción del diagnóstico / Experiences of mothers of children with Down syndrome with respect to the notification of diagnosis

En Chile la tasa de Síndrome de Down es de 2,47 por cada mil nacimientos, con tendencia al aumento. El momento del diagnóstico se constituye como un proceso esencial en la asimilación del mismo por parte de las madres. El objetivo del presente es describir las experiencias de madres con niños con Síndrome de Down, al momento de conocer el diagnóstico. METODOLOGÍA: Estudio cualitativo de tipo descriptivo. La muestra se compuso por madres pertenecientes a la corporación "EduDown Providencia". Se realizaron 10 entrevistas semiestructuradas individuales y dos grupos focales, previo consentimiento informado, las entrevistas fueron audiograbadas con transcripciones textuales y luego analizadas. RESULTADOS: Se obtuvieron tres grandes categorías relacionadas con los objetivos del estudio: Factores que influyen en la recepción del diagnóstico, el rol del profesional y redes de apoyo, y dos categorías emergentes. DISCUSIÓN: En el diagnóstico prenatal es relevante preparar a las madres con el fin de orientar y acompañar el proceso desde la noticia y con posterioridad al nacimiento, hecho no manifestado en este estudio. La recomendación al entregar el diagnóstico, principalmente posnatal es: favorecer la privacidad, un ambiente tranquilo, informar a ambos padres acompañados del recién nacido. Las madres de este estudio no presentan sentimientos de culpa, rechazo y negación hacia el hijo, aspectos que aparecen como relevantes en otros estudios. Las madres manifiestan la falta de habilidades que tienen los profesionales para comunicar la noticia y las dificultades económicas que implica tener un hijo con esta condición.

In Chile, the incidence of Down syndrome is 2.47 per one thousand births, a rate which is gradually increasing. The moment of diagnosis is considered to be a crucial moment in the mother's process of assimilation. The objective of the present study is to describe the experiences of mothers of children with Down Syndrome at the time of diagnosis. METHODOLOGY: A descriptive qualitative study. The sample was composed of mothers belonging to the corporation "EduDown Providencia". Ten individual semi-structured interviews and two focus groups were conducted, with prior informed consent. Interviews were recorded, textually transcribed, and analyzed. RESULTS: There were three major categories related to the study objectives ­ factors influencing the reception of the diagnosis, the role of the health professionals, and support networks ­ and two emerging categories. DISCUSSION: In the prenatal diagnosis, it is important to prepare the mothers in order to guide and accompany the process, from the notification until after the birth, a fact which was not manifested in this study. Recommendations regarding the notification of the diagnosis, especially if it is postnatal, include protecting privacy and facilitating a quiet environment, to inform both parents accompanied by the newborn. The mothers of this study did not present feelings of guilt, rejection and denial towards their children, in contrast to the findings of other studies. Mothers discussed the lack of skill that professionals had in communicating the news and the economic difficulties associated with having a child with this condition.

A note on motor skill acquisition in mild and moderate Down syndrome individuals

Abstract This study investigated the acquisition of a serial motor skill in individuals with Down syndrome with two levels of handicap, mild group (mean age = 14.5 years, SD = 2.3, 7 individuals) and moderate group (mean age = 15.2 years, SD = 3.2, 7 individuals). The task involved single-arm sequential movements to five. The measures to access performance were overall sequence error, reaction time, and total movement time. To evaluate action program, formation variability of sequencing and relative timing variability were considered. Although there was no clear practice effect, the results showed that the level of handicap led to different strategies to plan and control the actions. The moderate group presented a less stable action program expressed in the variability in sequencing and timing. Their longer reaction times also suggest a heavy demand on central processing in accord with the one-target advantage hypothesis and also due to memory deficits to select and plan movements.

A interação entre as pessoas com síndrome de Down e seus irmãos: um estudo exploratório / The interaction between people with Down syndrome and their siblings: an exploratory study

Resumo A presença de uma pessoa com deficiência provoca transformações na família que exigem, de cada membro, redefinição de papéis. O irmão, como todos os outros membros, passa por processos de frustração, aceitação, culpa e mudanças. Nesse sentido, objetivou-se (a) analisar a interação entre o irmão com desenvolvimento típico e o com síndrome de Down; (b) identificar que informação e reação os irmãos com desenvolvimento típico possuem sobre o diagnóstico da síndrome de Down; (c) verificar se houve ou não modificações no contexto familiar e em suas próprias vidas após o nascimento do irmão com síndrome de Down. A pesquisa, realizada por meio de entrevistas, teve como participantes sete sujeitos com desenvolvimento típico, irmãos de pessoas com síndrome de Down. O estudo demonstrou que os irmãos, assim como os demais agentes familiares, passam por processos de aceitação, confusão e por várias outras complexidades com a qual a deficiência está atrelada, mas que estas não são tão marcantes quanto aos de seus pais. Um indicativo apontado no estudo se refere à importância de grupos de apoio para irmãos, que visem trabalhar questões como preconceito e sentimentos aversivos perante a deficiência. Aqueles com desenvolvimento típico precisam de informações corretas, bem como apoio, visando favorecer a interação entre irmãos.

Abstract The presence of a disabled person causes transformations in the family that demand a redefinition of the role of each member. Siblings, like all other members, experience frustration, acceptance, guilt and adaptation. In this respect, an attempt was made to; (a) analyze the interaction between a sibling with standard development and a sibling with Down syndrome; (b) identify what information and reaction the siblings with standard development have regarding the diagnosis of Down syndrome; (c) verify whether or not there were changes in the family context and also changes in their own lives after the birth of the sibling with Down syndrome. The survey was conducted through interviews, the participants being seven children with standard development having siblings with Down syndrome. The study showed that the siblings, as well as the other family members, experience processes of acceptance, confusion and other complex emotions related to the disability, albeit they are not as marked as those experienced by their parents. A fact revealed in this study is the importance of support groups for siblings, seeking to handle issues such as prejudice and adverse feelings towards disability. The siblings with standard development must have correct information, as well as support, in order to foster healthy interaction between siblings.

Bioética: necesidad de su aplicación en la atención a niños con Síndrome de Down / Bioethics: The Need for Its Application in the Care of Down-syndrome Children

Introducción: la Bioética concierne esencialmente al ser humano, en relación con sus factores ambientales pero su campo es más amplio y mucho más interdisciplinario que la ética médica. Es necesario que todos los profesionales médicos o especialistas de la educación especial conozcan nociones de bioética para su aplicación en el manejo de los niños con síndrome de Down desde la más temprana edad, porque juegan un papel importante en el manejo de los mismos y de la familia desde el nacimiento. Objetivo: destacar la necesidad de los principios de la bioética en la atención integral a los niños con síndrome de Down y sus familias en todos los niveles de atención médica, principalmente en la Atención Primaria de Salud. Conclusión: el tratamiento al niño y la niña con Síndrome de Down debe incluir una integralidad en los aspectos de atención incluyendo la aplicación de los principios bioéticos con el fin de alcanzar la mayor dignidad posible(AU)

Introduction: Bioethics essentially concerns the human being, in relation to the environmental factors but its scope is broader and more interdisciplinary medical ethics. It is necessary that all medical professionals or specialists from special education to know notions of bioethics for the management of children with Down Syndrome from an early age, since these notions play an important role in managing these children and the family. Objective: Highlight the need for the bioethics principles in the comprehensive care for children with Down syndrome and their families at all levels of health care, mostly in Primary Health Care. Conclusion: The treatment to children with Down syndrome should include a comprehensiveness in aspects of care including application of bioethical principles in order to achieve the greatest possible dignity(AU)

Qualidade de vida de cuidadores familiares de pessoas com Síndrome de Down / Calidad de vida de cuidadores familiares de personas con Síndrome de Down / Quality of life of family caregivers of people with Down Syndrome

To analyze the perception of parents/caregivers of people with Down syndrome on quality of life. Methods: It is a qualitative study, which used for data collection semi-structured interviews with 10 caregiver parents of people with Down syndrome. To analyze the data, we used the content analysis technique. Results: It was observed that caregivers are mothers over the age of 30, who declared themselves as racially mixed (Pardo in Portuguese), live with a partner, practice some type of physical activity and attend any educational institution. Moreover, they had as main occupation the caregiver role. Caregivers reported that access to leisure; health; family relationships; general welfare; Material and rights were the factors that influence the quality of life. Conclusion: it was concluded that caregiver parents of people with Down syndrome had different views on the quality of life...

Analisar a percepção de pais/cuidadores de pessoas com Síndrome de Down sobre qualidade de vida. Métodos: trata-se de um estudo qualitativo, que utilizou para coleta de dados a entrevista semiestruturada com 10 pais cuidadores de pessoas com Síndrome de Down. Para analisar os dados, recorreu-se a Técnica de Análise de Conteúdo. Resultados: observou-se que, os cuidadores são mães com idade acima de 30 anos, que se autodeclararam pardas, conviviam com um companheiro, praticavam algum tipo de atividade física e frequentaram alguma instituição de ensino. Além disso, possuíam como ocupação principal a função de cuidador. Os cuidadores relataram que o acesso ao lazer; à saúde; relações familiares; bem estar geral; material e direitos seriam os fatores que influenciam na qualidade de vida. Conclusão: concluiu-se que os pais cuidadores de pessoas com Síndrome de Down apresentaram diferentes concepções sobre a qualidade de vida...

Analizar la percepción de los padres/cuidadores de personas con síndrome de Down en la calidad de vida. Métodos: se trata de un estudio cualitativo, que utilizó la recolección de datos de entrevistas semiestructuradas con 10 padres cuidadores de personas con síndrome de Down. Para analizar los datos, se utilizó la técnica de análisis de contenido. Resultados: se observó que los cuidadores son mujeres mayores de 30, que se declararon marrón, que viven con un compañero, practicaban algún tipo de actividad física y asistieron a cualquier institución educativa. Por otra parte, tenía como ocupación principal rol de cuidador. Los médicos informaron que el acceso al ocio; la salud; las relaciones familiares; bienestar general; Material y derechos fueron los factores que influyen en la calidad de vida. Conclusión: se concluyó que los cuidadores padres de personas con síndrome de Down tenían diferentes opiniones sobre la calidad de vida...

Estudio Descriptivo: Expresiones de Aceptación ­ Rechazo Parental hacia Hijos con Síndrome de Down / Descriptive Research: Parental Acceptance-Rejection Expressions to Children with Down Syndrome

INTRODUCCIÓN: La teoría de la Aceptación-Rechazo Parental (PARTheory) es una teoría basada en la evidencia que trata de predecir y explicar las principales causas, consecuencias y correlatos de la aceptación ­ rechazo especialmente parental a lo largo del ciclo vital. La presente investigación estuvo enfocada en identificar la tipología de las familias con niños con Síndrome de Down (SD), describir la frecuencia de las manifestaciones de aceptación-rechazo parental hacia ellos y determinar como las características de estos niños se relacionan con tales expresiones. MÉTODOS: Estudio descriptivo cuantitativo y relacional. Incluyó a 167 padres de 96 hijos diagnosticados con SD; 74 papás de entre 22 y 82 años (X: 46.6±12.92 años), y 93 madres de entre 21 y 72 años (X:43.32±11.94 años). Se aplicó el "Cuestionario de aceptación ­ rechazo Parental de Rohner PARQ/ Control". Las variables de estudio comprendieron: aceptación, indiferencia, agresión, rechazo y control parental; fueron relacionadas con tipología familiar, sexo, edad y nivel de estudio de los padres; sexo, nivel de discapacidad de los niños y orden de nacimiento. RESULTADOS: La tipología familiar predominante fue la nuclear (62.5%) seguida de la monoparental materna (20.8%). Los resultados evidencian que los padres/madres de los niños con SD manifiestan frecuentes expresiones de afecto y control; en tanto que las manifestaciones de agresión, indiferencia y rechazo son escasas. Se encontró una relación inversa significativa entre el control y la edad de los padres/ madres, y entre el grado de discapacidad y el afecto (rs: -0.230; P: 0.003). Se presume que los indicadores de rechazo no evalúan las dimensiones como se esperaba (baja consistencia interna entre los ítems). CONCLUSIONES: El comportamiento de los padres/madres con hijos con SD tuvo una inclinación positiva hacia el afecto, pero también se evidenciaron muestras de control; no se encontró relación entre las dimensiones de afecto ­ rechazo parental y el grado de discapacidad de los hijos.(au)

BACKGROUND: The Parental Acceptance-Rejection Theory (PARTheory) is a evidence-based theory which tries to predict and explain the main causes, consequences and correlations of parental acceptance and rejection throughout the life cycle. This research was focused on the identification of different kinds of families with children affected by Down Syndrome (DS), describe the frequency of parental acceptance-rejection manifestations towards them and determine how do the characteristics of these children are related to such expressions. METHODS: This is a descriptive research with a relational approach. It included 167 parents of 96 children diagnosed with SD; 74 parents aged between 22 and 82 years (X: 46.6±12.92 years) and 93 mothers aged 21 to 72 years (X:43.32±11.94). The "Parental Acceptance-Rejection Rohner Questionnaire ­ PARQ / Control" was applied. Study variables comprehended acceptance, indifference, aggression, rejection and parental control; these were related to family type, sex, age and parental education level and also children sex, disability level and birth order. RESULTS: Nuclear family was the most frequent (62.5%), followed by single-parent maternal families (20.8%). Results evidenced that parents of children with DS show common expressions of affection and control; while aggression, indifference and rejection events were limited. An inverse significant relation was found between control and age of parents, also with disability degree and affection (rs: -0.230; P: 0.003). Rejection indicators are likely not to assess dimensions as expected (low internal consistency among the items). CONCLUSIONS: The behavior of parents of children with DS has a positive disposition towards affection, but control expressions were also shown. Relation between parental affection-rejection dimensions and disability degree of children was not significant.(au)

Adolescência e síndrome de down na tela / Adolescence and down syndrome on the screen / Adolescencia y síndrome de down en la pantalla

Este artigo, escrito na forma de ensaio, propõe-se a discutir algumas nuances da passagem adolescente vivida pelos sujeitos portadores da síndrome de Down, a partir de uma leitura/escuta (Iribarry, 2003) da narrativa do filme Colegas (Galvão, 2013). Entendemos que, ao desvelar alguns traços presentes na narrativa, estamos contribuindo para a reflexão acerca da passagem da adolescência com tais sujeitos. Trata-se de um modo de investigação que, ao partir do enlace da tríade psicanálise, educação e cinema, toma as produções da cultura como elementos passíveis de serem lidos/escutados e de produzirem alguma algo novo sobre o campo ao qual se debruça - o tema da adolescência e a síndrome de Down.

This article, written in essay form, aims to discuss some aspects of the adolescence transition experienced by Down syndrome individuals, from a reading/listening approach (Iribarry, 2003) of the narrative of the film Colegas (Galvão, 2013). We understand that by unveiling some traits present in the narrative we are contributing to the reflection on the adolescence transition of these subjects. It is a research method that, from the triad psychoanalysis, education and cinema, considers the cultural productions as elements capable of being read/heard and to produce some new elements on the field that this article discusses - of the relationship between adolescence and Down syndrome.

Este artículo, escrito en forma de ensayo, se propone a discutir algunos matices de la adolescencia vivida por las personas portadoras del síndrome de Down a partir de una lectura/escucha (Iribarry, 2003) de la narrativa de la película Colegas (Galvão, 2013). Entendemos que, al desvelar algunos rasgos que se encuentran en la narrativa, contribuiremos con la reflexión acerca de la adolescencia de estos sujetos. Se refiere a un tipo de investigación que, a partir del enlace de la tríade psicoanálisis, educación y cinema, toma las producciones de la cultura como elementos capaces de ser leídos/oídos y de producir algo de nuevo acerca del campo en cuestión - la adolescencia y el síndrome de Down.

Estresse e ajustamento conjugal de casais com filho(a) com Síndrome de Down / Stress and marital adjustament of couples with children with Down Syndrome

O presente estudo teve o objetivo de investigar estresse e ajustamento conjugal em 19 casais com um(a) filho(a) com síndrome de Down. As crianças tinham entre quatro e dez anos, sendo 11 do sexo masculino e 8 do sexo feminino. Utilizou-se o Questionário de Caracterização do Sistema Familiar, Dyadic Adjustment Scale em seu formato traduzido para a língua portuguesa do Brasil (Escala de Ajustamento Diádico) e o ISSL para adultos. As mães são mais acometidas pelo estresse (n=11) doque os pais (n=7). Todas as mães percebem seu relacionamento conjugal como ajustado e somente dois pais o percebem como desajustado. Não foram encontradas associações significativas entre escores da EAD, sexo e idade dos genitores; e tempo de convivência do casal

The present study aimed to investigate the stress and marital adjustment in 19 couples with a child with Down syndrome. The children were between four and ten years, 11 males and 8 females. We used the Family Characteristics Questionnaire, the Dyadic Adjustment Scale in its format translated into Portuguese of Brazil (Dyadic Adjustment Scale) and ISSL for adults. Mothers are more affected by stress (n = 11) than fathers (n = 7). All mothers perceive their marital relationship as adjusted and only two fathers perceive as inadequate. No significant associations were found between scores of DAS, sex and age of the parents, and the couple's time together

Tanshinone IIA attenuates interleukin-17A-induced systemic sclerosis patient-derived dermal vascular smooth muscle cell activation via inhibition of the extracellular signal-regulated kinase signaling pathway

OBJECTIVE: Salvia miltiorrhiza has long been used to treat systemic sclerosis. Tanshinone IIA, one of the phytochemicals derived from the roots of Salvia miltiorrhiza, exhibits multiple biological activities. The present study aimed to investigate whether tanshinone IIA has an effect on the interleukin-17A-induced functional activation of systemic sclerosis patient-derived dermal vascular smooth muscle cells. METHODS: Systemic sclerosis patient-derived dermal vascular smooth muscle cells were incubated with various dosages of tanshinone IIA in the presence of interleukin-17A or the serum of systemic sclerosis patients. Cell proliferation was assessed using Cell Counting Kit-8. The expression of collagen 1 and 3 in cells was evaluated by immunofluorescence. Cell migration was measured using a transwell assay. The expression of phospho-extracellular signal-regulated kinase was detected by Western blotting. RESULTS: Our data demonstrate that tanshinone IIA exerts an inhibitory effect on interleukin-17A-induced systemic sclerosis patient-derived dermal vascular smooth muscle cell proliferation, collagen synthesis and migration. CONCLUSION: These findings suggest that tanshinone IIA might serve as a promising therapeutic agent for the treatment of systemic sclerosis. .

Falamos da mesma criança? Concordância mãe - pai - professores na avaliação do temperamento de crianças portuguesas / Is that the same child? Parents' and teachers' agreement in temperament assessment of portuguese children

Com este trabalho pretendeu-se analisar o grau de concordância entre diferentes informadores - mães, pais, professores do ensino regular e dos apoios educativos (quando aplicável) - na avaliação do temperamento de crianças com 2 a 7 anos de idade. O estudo incidiu sobre uma amostra de 138 crianças, distribuídas por quatro grupos com diferentes características desenvolvimentais: síndrome de Down, Autismo, Nascimento Prematuro e Desenvolvimento Normal. Os informadores preencheram a Temperament Assessment Battery for Children - Revised nas versões para pais ou para professores. Encontraram-se correlações elevadas entre informadores que observam a criança no mesmo contexto e baixas entre avaliações de adultos pertencentes a contextos diferentes. Os resultados são discutidos em função das suas possíveis implicações para a avaliação do temperamento de crianças.

This study was intended to address the issue of convergence between informants (mother, father, regular teacher and special education teacher, whenever applicable) when assessing the temperament of children between 2 and 7 years old. The study was based on a sample of 138 children, distributed into four groups with different developmental characteristics: Down syndrome, Autism, Premature Birth, and Normal Development. Informants filled in the Temperament Assessment Battery for Children - Revised in its parents' or teachers' versions. Whereas correlations between assessments made by adults of different contexts were low, high correlations were found between informants who observe the child in the same context. Results are discussed in terms of their possible implications for the assessment of children's temperament.

¿Cómo reciben los padres la noticia del diagnóstico de su hijo con síndrome de Down?: what do the parents think? / Receiving the diagnosis of Down syndrome

Background: Having a child with Down syndrome (DS) is usually unexpected and stressful. Aim: To describe the experiences of parents of children with DS at the time of diagnosis. Material and Methods: A self-administered survey was answered by 345 parents (62% women) with an offspring with DS. Results: Eighty four percent of parents received a postnatal diagnosis of DS, 32.3% were informed of the diagnosis in the presence of his or her partner and 19.3%o received some form of printed material regarding DS. Fifty six percent of respondents considered that the delivery of the diagnosis was inadequate. Factors associated with an overall positive experience were prenatal diagnosis (Odds Ratio (OR) 3.91 (95% Confidence Intervals (CI) 2.06-7.44)) and the presence of both parents at the time of the delivery of the diagnosis (OR 1.84 (95%> CI 1.16-2.91)). Fifty three percent of respondents believe that prenatal diagnosis of DS is preferable. Conclusions: The majority of parents are unsatisfied with the way the diagnosis of DS is delivered. Efforts should be made to educate health personnel regarding the delivery of the diagnosis of SD, to foster opportunities for prenatal diagnosis and to improve the delivery of printed material.

Análise do desempenho de autocuidado em crianças com Síndrome de Down / Self-care functional development analysis of children with Down Syndrome

A Síndrome de Down (SD), uma das mais frequentes anomalias dos cromossomos autossômicos e a mais antiga causa de retardo mental, é uma desordem genética diferenciada por apresentar uma série de características físicas e mentais específicas. Caracteriza-se por ser uma alteração na divisão cromossômica, resultando na triplicação do material genético referente ao cromossomo 21. O objetivo foi evidenciar o desempenho funcional na área de autocuidado de crianças com SD na faixa etária dos 3 aos 7 anos. Participaram da pesquisa 17 crianças com SD, assistidas na Associação de Pais e Amigos dos Excepcionais (APAE), utilizando-se o teste Inventário de Avaliação Pediátrica de Incapacidade (PEDI). Após a aplicação do teste observou-se que o desempenho funcional de crianças com SD é inferior ao de crianças sem a síndrome e que fatores externos como a inserção das crianças no processo escolar e o grau de escolaridade das cuidadoras interferem no desenvolvimento delas. O PEDI mostrou ser um instrumento importante para profissionais de saúde, em especial os terapeutas ocupacionais, visto que identifica a área específica em que a criança está em desvantagem, permitindo vislumbrar a possibilidade de intervir de forma estratégica nas dificuldades específicas de cada uma.

Down syndrome (DS) differs from other genetic disorders by presenting a specific group of physical and mental characteristics, representing one of the most usual abnormalities of autosomal chromosomes and being the oldest known cause of mental retardation. It is characterized by a change in chromosome division resulting in the tripling of genetic material on chromosome 21. Objective: Highlight the functional performance in the area of self-care with DS in children from three to seven years old. Methodology: Seventeen children with DS participated in the research, attended at the Association of Parents and Friends of the Mentally Disabled (APAE), using the Pediatric Evaluation Disability Inventory (PEDI). Result: After test application, it was possible to observe that the functional performance of children with DS is lower than that of children with no syndrome, and that external factors such as the inclusion of children in the school process and the educational level of caretakers interfere in the development of children. Conclusion: PEDI has proved to be an important tool for health professionals, mainly for occupational therapists, since it identifies the specific areas that children are disadvantaged, allowing the possibility to intervene strategically in the specific difficulties of each child.

Interações sociais de crianças pré-escolares com Síndrome de Down durante atividades extracurriculares / Social interactions of preschool children with Down syndrome during extracurricular activities / Interacciones sociales de niños en edad preescolar con síndrome de Down durante actividades extracurriculares

O objetivo desta pesquisa foi identificar o processo de interação social de crianças com Síndrome de Down (SD) durante atividades extracurriculares na rede regular de educação infantil do município de Ribeirão Preto. Participaram da pesquisa seis crianças na faixa etária de 3 a 6 anos. Foram realizadas duas filmagens de cada criança em situações de interação social durante atividades extracurriculares, e analisadas através de quinze comportamentos, distribuídos em duas categorias de habilidades sociais: interpessoais e de autoexpressão. Os resultados demonstraram que, quanto às habilidades interpessoais, houve maior ocorrência do comportamento "ocorre interação com outra criança". Já na categoria habilidades de autoexpressão, apenas os comportamentos "sorri" e "imita outras crianças" apresentam ocorrência significativa. Os comportamentos mais frequentes encontrados neste estudo permitem compreender que o ambiente escolar torna-se um facilitador na interação da criança com SD com outras crianças de desenvolvimento típico, possibilitando o desenvolvimento das habilidades sociais esperadas.

The aim of this research was to identify the process of social interaction of children with Down Syndrome (DS) during extracurricular activities in the regular early childhood education in Ribeirão Preto-SP, Brazil. Six children aged 3-6 years participated in this study. There were two recordings of each child in situations of social interaction during extracurricular activities, and analyzed by 15 behaviors, divided into two categories of social skills: interpersonal and self-expression. The results demonstrate that, in the interpersonal skill category, the higher occurrence was the behavior "occurs interaction with other children". In the self-expression skills category, only the behaviors "smiles" and "imitates other children" have significant occurrence. The behaviors more frequently identified in this study permit to understand that the school environment is a facilitator for the interaction of child with DS with the typical developmental children, allowing him/her to develop the expected social skills.

El objetivo de esta investigación fue identificar el proceso de interacción social de los niños con Síndrome de Down (SD) en las actividades extraescolares en el jardín de niños regular en el municipio de Ribeirão Preto-SP, Brasil. Participaron en este estudio seis niños con edad entre 3 y 6 anos. Fueran realizadas dos grabaciones de cada niño en situaciones de interacción social durante las actividades extracurriculares, que se analizaron por 15 comportamientos, divididos en dos categorías de habilidades sociales: la interpersonal y la expresión personal. Los resultados demostraran que, en la categoría habilidades interpersonales, existe mayor incidencia de la conducta "está interactuando con otro niño". En la categoría habilidades de autoexpresión, sólo los comportamientos "sonrisas" y "imita a otros niños" tuvieran ocurrencia significativa. Los comportamientos más comunes que se encuentran en este estudio demuestran que el entorno escolar se convierte en un facilitador de la interacción del niño con síndrome de Down con otros niños con desarrollo normal, lo que permite el desarrollo de habilidades sociales esperadas.