Medical and forensic aspects of performing a remote interrogation of persons with disabilities / Aspectos médicos y forenses de la realización de un interrogatorio a distancia a personas con discapacidad / Aspectos médicos e forenses da realização de um interrogatório remoto de pessoas com deficiências

The purpose of the study is to develop new proposals for improving criminal procedural legislation in the field of conducting remote investigative actions with disabled persons, taking into account their physiological and functional characteristics. Research material and methods: This study is based on an analysis of the norms regarding the criminal procedural legislation of the Republic of Kazakhstan and a number of foreign states that regulate the procedure for conducting remote investigative actions - as well as scientific publications on the research topic in the field of psychology and medicine. An integrated approach involves considering the studied phenomena of communication during an investigative action as a set of interconnected and interdependent elements, i.e., consideration of the issue from the medical, psychological and legal points of view. Situational and systemic types of analysis, complex sociological analysis, diagnostics and forecasting investigative situation were also used. Methods of analysis and synthesis, induction, deduction, methods of qualitative and quantitative analysis were employed to clarify the legal essence of the studied phenomenon. Findings: practical recommendations aimed at improving and developing the performance of remote investigative actions involving persons with disabilities (further ­ FWDs) y creating optimal conditions for the transfer of verbal, medical, and psychological information, as well as technical and forensic support for conducting RIAs. The following conclusions were made: in order to improve the current legislation, it is advisable to consider the issue of developing and including a special norm in the legislation, taking into account the characteristics of the communicative competencies of persons with disabilities. This norm regulates the procedure for conducting investigative actions involving the mute, deaf, blind and other persons with disabilities.

El objetivo del estudio es elaborar nuevas propuestas de mejora de la legislación procesal penal en el ámbito de la realización de actuaciones de investigación a distancia con personas con discapacidad, teniendo en cuenta sus características fisiológicas y funcionales. Material y métodos de investigación: Este estudio se basa en un análisis de las normas relativas a la legislación procesal penal de la República de Kazajstán y de una serie de Estados extranjeros que regulan el procedimiento para llevar a cabo acciones de investigación a distancia -, así como publicaciones científicas sobre el tema de investigación en el campo de la psicología y la medicina. Un enfoque integrado implica considerar los fenómenos estudiados de comunicación durante una acción de investigación como un conjunto de elementos interconectados e interdependientes, es decir, considerar la cuestión desde los puntos de vista médico, psicológico y jurídico. También se utilizaron los tipos de análisis situacional y sistémico, el análisis sociológico complejo, el diagnóstico y la previsión de la situación de investigación. Se emplearon métodos de análisis y síntesis, inducción, deducción, métodos de análisis cualitativo y cuantitativo para aclarar la esencia jurídica del fenómeno estudiado. Conclusiones: recomendaciones prácticas destinadas a mejorar y desarrollar la realización de acciones de investigación a distancia en las que participen personas con discapacidad (en adelante - RIA) y crear condiciones óptimas para la transferencia de información verbal, médica y psicológica, así como apoyo técnico y forense para la realización de las RIA. Se llegó a las siguientes conclusiones:con el fin de mejorar la legislación actual, es aconsejable considerar la cuestión de desarrollar e incluir una norma especial en la legislación, teniendo en cuenta las características de las competencias comunicativas de las personas con discapacidad. Esta norma regula el procedimiento para llevar a cabo acciones de investigación en las que estén implicadas personas mudas, sordas, ciegas y otras personas con discapacidad.

O objetivo do estudo é desenvolver novas propostas para aprimorar a legislação processual penal no campo da realização de ações investigativas remotas com pessoas com deficiência, levando em conta suas características fisiológicas e funcionais. Material e métodos de pesquisa: Este estudo baseia-se em uma análise das normas relativas à legislação processual penal da República do Cazaquistão e de vários países estrangeiros que regulamentam o procedimento para a realização de ações investigativas remotas, bem como em publicações científicas sobre o tópico de pesquisa no campo da psicologia e da medicina. Uma abordagem integrada envolve a consideração dos fenômenos estudados de comunicação durante uma ação investigativa como um conjunto de elementos interconectados e interdependentes, ou seja, a consideração da questão dos pontos de vista médico, psicológico e jurídico. Também foram usados tipos de análise situacional e sistêmica, análise sociológica complexa, diagnóstico e previsão da situação investigativa. Métodos de análise e síntese, indução, dedução, métodos de análise qualitativa e quantitativa foram empregados para esclarecer a essência legal do fenômeno estudado. Resultados: recomendações práticas com o objetivo de aprimorar e desenvolver o desempenho de ações investigativas remotas envolvendo pessoas com deficiência (mais adiante - FWDs), criando condições ideais para a transferência de informações verbais, médicas e psicológicas, bem como suporte técnico e forense para a realização de RIAs. Foram feitas as seguintes conclusões: para aprimorar a legislação atual, é aconselhável considerar a questão do desenvolvimento e da inclusão de uma norma especial na legislação, levando em conta as características das competências comunicativas das pessoas com deficiência. Essa norma regulamenta o procedimento para conduzir ações investigativas envolvendo pessoas mudas, surdas, cegas e outras pessoas com deficiência.

Research on community-based rehabilitation exercise and physical activity and its benefits for people with mild and moderate disability in Shenzhen, Guangdong, China / 中国康复理论与实践

ObjectiveTo investigate the effect of community-based rehabilitation exercise and physical activity on the physical activity levels, functional states, and quality of life for people with mild and moderate disabilities in community settings, to ascertain the health benefits of their engagement in such fitness sports activities, anchoring in the WHO "Global Action Plan on Physical Activity 2018-2030: More Active People for a Healthier World" and the guidelines tailored for people with disabilities, using the theoretical framework and methodology of the International Classification of Functioning, Disability and Health (ICF). MethodsAligning with the WHO guidelines for people with disabilities and the ICF, a community-based rehabilitation exercise and physical activity program was designed for individuals with mild to moderate disabilities, featuring activities like fitness training (aerobic and resistance exercises), skill exercises (such as balance and coordination), as well as sports and recreational games (ball and games, etc.). A total of 230 people with mild and moderate disabilities were recruited from 20 communities in Shenzhen, with types of disabilities including physical, speech, intellectual, and mental. Professional rehabilitation fitness instructors implemented and supervised the program. The activities were of low to moderate intensity, 30 to 50 minutes per session, five times a month for six months. The community-based rehabilitation exercise and physical activity progress of these individuals was surveyed using the International Physical Activity Questionnaire (IPAQ), and their overall functioning was evaluated with WHODAS 2.0. The health-related quality of life was measured with WHOQOL-BREF. The health benefits from participation in community-based rehabilitation exercise and physical activity were assessed in terms of functioning, activity involvement, and quality of life. ResultsAfter the fitness activities, participation levels significantly increased in IPAQ domains of work-related, transport-related, domestic and gardening activity, and leisure time (|t| > 3.391, P < 0.001). The scores significantly decreased in the domains of cognition, activity, self-care, getting along, life activities and participation; and overall scores also decreased in WHODAS 2.0 (t > 6.639, P < 0.001). The scores significantly increased in the four dimensions of WHOQOL-BREF (|t| > 7.486, P < 0.001). ConclusionAfter participating in a six-month community-based rehabilitation exercise and physical activity program of mild to moderate intensity, individuals with mild to moderate disabilities have improved in physical activity and engagement levels, and the overall functioning and quality of life.

Assistive technology application in educational contexts: policy framework and core areas / 中国康复理论与实践

ObjectiveTo study domestic and international policies and core areas related to assistive technology services for children with disabilities, to explore the application of assistive technology for children with special needs in the educational context. MethodsBased on the relevant policies and theoretical frameworks of policies on assistive technology services of United Nations, World Health Organization (WHO) and China, the policy frameworks and core areas of assistive technology in the educational context were analyzed using the theories of the six elements of the WHO assistive technology service system and the 5P service model, as well as the international and domestic classifications and directory lists of assistive technologies. ResultsInternational Classification of Functioning, Disability and Health (ICF) gave the definition and classification of assistive technology in educational scenarios. With the Convention on the Rights of Persons with Disabilities (CRPD) as the core and the Assistive Technology for Children with Disabilities (ATD) strategy as the centerpiece of the international policy, the core areas of assistive technology application in educational settings were established with the 5P Model, consisting of five related areas, namely individuals, policies, products, practitioners and service delivery, based on the six elements of the WHO assistive technology service system, namely leadership and governance, financing, human resources for health, service delivery, medical technology and health information system. The ecosystem focused on people, policies, products, practitioners and services that promote access to and use of assistive technology. ConclusionThe policy and core areas for the application of assistive technology in educational contexts are formed on the basis of ICF, with the CRPD at the core, and the strategy of ATD, to define scientifically the definition; and promote assistive technology services for children with disabilities from the perspective of the right to comprehensive, efficient, and child-centered development, to provide usable, accessible, affordable, adaptable, acceptable and quality assistive technology services to ensure that children with disabilities enjoy equal and quality education, and to improve the quality of life and well-being. A human-centered assistive technology ecosystem can be established using 5P Model, to innovate and develop assistive technology services for children with disabilities.

Sport biomechanics before and after the rio 2016 paralympic games / Biomecánica del deporte antes y después de los juegos paralímpicos rio 2016 / Biomecânica do esporte antes e depois dos jogos paralimpícos rio 2016

ABSTRACT Introduction: Events such as the Paralympic Games leave a series of legacies in the host societies. This is also applicable to the development of associated scientific knowledge, particularly in the field of sports biomechanics. Objective: The objective of this study is to investigate the Brazilian scientific production in the field of biomechanics in Paralympic sports during the cycle that preceded and followed the Rio 2016 Paralympic Games. Additionally, the study aims to provide insights for future research endeavors. Methods: The search was conducted on the Lattes Platform, utilizing the filters "Assunto" and "Doutores" and the keywords "Paralímpico" and "Paralympic." In total, 723 authors were identified who published articles related to the topic. Subsequently, the curricula were accessed, and the articles were sorted and identified, resulting in 37 articles that met all inclusion criteria. Results: The results indicate that: a) Brazil witnessed an increase in the number of publications after London 2012; b) The majority of these productions (87%) originate from Public Institutions; c) There was a greater participation of other regions of Brazil in the production of knowledge in the area after Rio 2016; d) Individual modalities such as powerlifting and athletics were the most researched, despite Brazil's reference status in some collective modalities; e) Women remain a minority, both as participants in research and as authors of publications; f) The productions demonstrate high levels of quality; g) The most commonly used research techniques in biomechanics were kinematics and dynamometry. Conclusion: The field of biomechanics in Paralympic sports has significantly benefited from the legacy generated by the Rio 2016 Paralympics. As future challenges for researchers, the following aspects stand out: maintaining the quality of productions, expanding studies to include collective modalities, increasing the participation of other federated entities in the production of knowledge in this field, promoting greater gender equity, and incorporating new research techniques in biomechanics. Level of Evidence II; Review Study.

RESUMEN Introducción: Eventos como los Juegos Paralímpicos dejan una serie de legados en las sociedades anfitrionas. Esto también es aplicable al desarrollo de conocimiento científico asociado, especialmente en el campo de la biomecánica deportiva. Objetivo: El objetivo de este estudio es investigar la producción científica brasileña en el campo de la biomecánica en deportes paralímpicos durante el ciclo que precedió y siguió a los Juegos Paralímpicos de Río 2016. Además, el estudio tiene como propósito brindar ideas para futuros esfuerzos de investigación. Métodos: La búsqueda se realizó en la Plataforma Lattes, utilizando los filtros " Assunto " y "Doutores" y las palabras clave "Paralímpico" y "Paralympic". En total, se identificaron 723 autores que publicaron artículos relacionados con el tema. Posteriormente, se accedió a los currículos y se clasificaron e identificaron los artículos, lo que resultó en 37 artículos que cumplieron con todos los criterios de inclusión. Resultados: Los resultados indican que: a) Brasil experimentó un aumento en el número de publicaciones después de Londres 2012; b) La mayoría de estas producciones (87%) provienen de Instituciones Públicas; c) Después de Río 2016, hubo una mayor participación de otras regiones de Brasil en la producción de conocimiento en el área; d) Las modalidades individuales, como levantamiento de pesas y atletismo, fueron las más investigadas, a pesar del estatus de referencia de Brasil en algunas modalidades colectivas; e) Las mujeres siguen siendo una minoría, tanto como participantes en investigaciones como autoras de publicaciones; f) Las producciones demuestran altos niveles de calidad; g) Las técnicas de investigación más utilizadas en biomecánica fueron la cinemática y la dinamometría. Conclusión: El campo de la biomecánica en deportes paralímpicos ha sido significativamente beneficiado por el legado generado por los Juegos Paralímpicos de Río 2016. Como desafíos futuros para los investigadores, se destacan los siguientes aspectos: mantener la calidad de las producciones, ampliar los estudios para incluir modalidades colectivas, aumentar la participación de otras entidades federadas en la producción del conocimiento en este campo, promover una mayor equidad de género e incorporar nuevas técnicas de investigación en biomecánica. Nivel de Evidencia II; Estudio de Revisión.

RESUMO Introdução: Eventos como os Jogos Paralímpicos deixam uma série de legados nas sociedades que as sediam. Não seria diferente quando se trata do desenvolvimento do conhecimento científico associado, em especial a biomecânica do esporte. Objetivo: Investigar a produção científica brasileira produzida em biomecânica no esporte paralímpico no ciclo que antecedeu e sucedeu os Jogos Paralímpicos Rio 2016, além de fornecer insights para novos estudos. Métodos: Foram realizadas buscas na Plataforma Lattes, sendo habilitados os filtros "Assunto" e "Doutores", com as palavras-chave "Paralímpico" e "Paralympic". Ao todo, foram encontrados 723 autores que publicaram artigo(s) relacionado(s) com o tema. Após acessar os currículos, os artigos foram triados e identificados, resultando em 37 artigos que preencheram todos os critérios de inclusão. Resultados: Os resultados mostram que a) Após Londres-2012, o Brasil tem aumentado o número de publicações; b) Grande parte das produções (87%) são oriundas de Instituições Públicas, c) Após Rio-2016 houve uma maior participação de outras regiões do Brasil na produção do conhecimento na área, d) Apesar do Brasil ser referência em algumas modalidades coletivas, modalidades individuais como o powerlifting e o atletismo, são as mais pesquisadas, e) Mulheres ainda são minoria, tanto como participantes das pesquisas quanto na autoria das publicações, f) As produções atingem elevados extratos de qualidade, g) As técnicas de pesquisa em biomecânica mais utilizadas foram a cinemática e dinamometria. Conclusão: A biomecânica no esporte paralímpico tem se valido do legado gerado pelas paralimpíadas Rio-2016. Como desafios futuros para os pesquisadores, destacam-se: manutenção da qualidade das produções, ampliação dos estudos para as modalidades coletivas, aumento da participação de outros entes federados na produção do conhecimento na área, promoção de uma maior equidade de gênero e incorporação de novas técnicas de pesquisa em biomecânica. Nível de Evidência II; Estudo de Revisão.

El deporte paralímpico en Chile: resultados históricos de las participaciones en los juegos paralímpicos de invierno y verano / Paralympic sport in Chile: historical results of participation in summer and winter paralympic games / O esporte paralímpico no Chile: resultados históricos das participações em jogos paralímpico de inverno e verão

Esta investigación tuvo como objetivo relatar la evolución del movimiento paralímpico y su vínculo con el escenario político nacional e internacional. Los Juegos Paralímpicos de Verano hicieron su debut en 1960, mientras que Chile participó por primera vez en 1992. Por otro lado, los Juegos Paralímpicos de Invierno comenzaron en 1976, y la primera participación chilena en este evento se produjo en 2002. Para el desarrollo del estudio se utilizó un análisis documental, donde se analizaron las convocatorias oficiales de las delegaciones chilenas, junto con las planillas de resultados generales obtenidos en los Juegos Paralímpicos, se extrajo de los documentos: el número de atletas participantes de ambos sexos y deportes, información que posteriormente fue agrupada en presencia o no de medallas y tipo de medalla obtenida y, a partir de aquello, se analizó por tipo de discapacidad y año de participación. A través de los años, Chile vivenció constantes procesos y cambios en los periodos de gestión, a esto se suma la promulgación de leyes, tanto nacionales como internacionales, junto con la constante ayuda recibida de distintas agrupaciones privadas y gubernamentales, resultando en un paulatino incremento de deportistas paralímpicos, situación que colaboró en gran medida con el desarrollo integral del movimiento paralímpico chileno hasta lo que es en la actualidad; este crecimiento facilitó resultados exitosos, como el obtenido en el año 2012 con la conquista de la primera medalla paralímpica de Chile, llegando a un total de siete medallas distribuidas en cuatro deportes en los Juegos Paralímpicos Tokio 2020, quedando situado en el ranking paralímpico en la cuadragésima quinta posición.

The aim of this paper was to describe the evolution of the Paralympic movement and its connection with the national and international political scenario. The Summer Paralympic Games made their debut in 1960, while Chile first participated in 1992. On the other hand, the Winter Paralympic Games began in 1976, and Chile's first participation in this event occurred in 2002. A documentary analysis was conducted for the study, in which the official documents of the Chilean delegations were analyzed, along with the overall results obtained in the Paralympic Games. The documents provided information on the number of participating athletes of both genders, results and sports. This information was later grouped based on the presence or absence of medals and the type of medal obtained. It was further analyzed by type of disability and year of participation. Over the years, Chile experienced constant processes and changes in management, in addition to the enactment of laws, both national and international. The constant support received from various private and governmental organizations contributed to the gradual increase in paralympic athletes, which greatly facilitated the overall development of the Chilean Paralympic movement to its current state. This growth led to successful outcomes, such as Chile's 1st Paralympic medal in 2012, and the country has now achieved a total of 7 medals in 4 disciplines in Paralympic Games Tokyo 2020, placing it in the 45th position in paralympic medal board.

O presente trabalho tem como objetivo relatar a evolução do movimento paralímpico e sua relação com o cenário político nacional e internacional. Os Jogos Paralímpicos de Verão fizeram sua estreia em 1960, enquanto o Chile participou pela primeira vez em 1992. Por outro lado, os Jogos Paralímpicos de Inverno começaram em 1976, e a primeira participação chilena neste evento ocorreu em 2002. O estudo foi realizado através de análise documental, de onde foram extraídas informações sobre as delegações chilenas, juntamente com as planilhas de resultados gerais obtidos dos Jogos Paralímpicos. As variáveis registradas foram número de atletas participantes de ambos os sexos, modalidades e esportes. As informações posteriormente foram agrupadas em quantidade de medalhas e tipo da medalha obtida, sendo analisadas por tipo de deficiência e ano de participação. Ao longo dos anos, o Chile experimentou constantes processos e mudanças nos períodos de gestão, como a promulgação de leis, tanto nacionais como internacionais, juntamente com a ajuda constante recebida de diferentes grupos privados e governamentais, resultando em aumento de atletas paralímpicos, situação que contribuiu com o desenvolvimento integral do movimento paralímpico chileno. Este crescimento facilitou resultados exitosos, como o obtido em 2012 com a conquista da primeira medalha paralímpica do Chile, alcançando hoje um total de 7 medalhas distribuídas em 4 disciplinas em Tóquio 2022, colocando-se na quadragésima quinta posição do quadro de medalhas.

Percepciones maternas sobre la sexualidad como tabú en personas con discapacidad

Fundamento: Una persona con discapacidad además de las barreras físicas enfrenta limitaciones sexuales, afectados por estereotipos sociales de diversa índole. Objetivo: Analizar las percepciones maternas sobre la sexualidad como un tabú para las personas que tienen algún tipo de discapacidad física o intelectual. Metodología: Estudio cualitativo con enfoque fenomenológico; se entrevistaron 100 madres, las cuales tienen familiares con discapacidad intelectual y física. Se analizó su sexualidad como tabú, y en función de ello varios subtemas y códigos de análisis. Se empleó la entrevista, procesada con Atlas. Resultados: Se observó que algunas personas con discapacidad tienen pérdida del deseo sexual; y sus familiares el sexo lo conceptualizan y lo relacionan con la prostitución. A muchos de ellos los esterilizan sin su consentimiento con la idea de que no serían capaces de ser responsables de formar una familia, o que los hijos tengan la misma discapacidad que sus progenitores. Conclusiones: Existe rechazo social a las personas con discapacidad, todavía no hay una inclusión total a la sociedad y peor aún a sus derechos de sexualidad. A las personas con discapacidad en ocasiones se les ha privado de las decisiones corporales de control natal por prejuicios y miedos de sus familiares por factores hereditarios; idea esta muy presente en el contexto estudiado; por ello, el sexo es un tabú para las madres entrevistadas de personas con discapacidad.

Background: A disabled person faces sexual limitations in addition to physical barriers, affected by various kinds of social stereotypes. Objective: To analyze maternal perceptions about sexuality as a taboo for persons who have some physical or intellectual disability. Methodology: Qualitative study with a phenomenological approach; 100 mothers were interviewed, all of whom have relatives with intellectual and physical disabilities. Their sexuality as a taboo was analyzed, and, in function of this, several sub-themes and analyses codes. The interview, processed with Atlas, was applied. Results: It was observed that some disabled persons have sexual desire loss, and their family members conceptualize sex and relate it with prostitution. Many of them are sterilized without their consent with the idea that they would not be capable to be responsible for raising a family, or that the children have the same disability as their parents. Conclusions: There is social rejection for people with disabilities; there is still no total inclusion in society and even worse to their sexuality rights. Persons with disabilities have on occasion been deprived of bodily birth control decisions because of prejudices and fears of their family members due to hereditary factors, this idea is very present in the studied context; therefore, sex is a taboo for the interviewed mothers of disabled persons.

Percepção de cuidadores sobre a qualidade de serviços de Fisioterapia Neuropediátrica em Centros de reabilitação no estado da Paraíba, Brasil / Caregiver perception of the quality of Neuropediatric Physiotherapy services at rehabilitation Centers in the State of Paraíba, Brazil

Este trabalho teve como objetivo avaliar a percepção de curadores sobre a qualidade dos serviços de Fisioterapia neuropediátrica ofertados em Centros Especializados em reabilitação (CER) no Brasil. Trata-se de um estudo transversal, quantitativo, de caráter avaliativo, cujo público-alvo foi representado por cuidadores das crianças em reabilitação. O instrumento AQSF-Neuroped foi utilizado para avaliar a qualidade dos serviços de Fisioterapia neuropediátrica em três CER, com base na percepção de 320 cuidadores. Utilizou-se o teste de hipótese para uma proporção a partir de cada item e dimensão do AQSF-Neuroped. Os modelos Weight of Evidence e Análise de Classes Latentes foram usados para avaliar o comportamento de variáveis sobre a percepção de qualidade. Obteve-se um escore médio total de qualidade de 133±14 pontos, implicando uma percepção positiva de qualidade; porém, há aspectos relacionados à estrutura física (dimensão interpessoal) e ao acesso (dimensão organizacional II) que precisam ser aprimorados (p-valores<0,05) para melhor atender às expectativas dos cuidadores. O CER B foi melhor avaliado dentre os demais serviços (IV<0,10). A ACL permitiu identificar, por meio da formação de grupo, características do cuidador que determinaram uma perspectiva positiva ou negativa da qualidade. Assim, disponibilizou-se os resultados para subsidiar as melhores práticas nos serviços.

This study evaluates the perception of caregivers of the quality of neuropediatric physiotherapy services offered at specialized rehabilitation centers (SRC) in Brazil. This is a cross-sectional, quantitative, evaluative study whose target population was caregivers of children in rehabilitation. The AQSF-Neuroped instrument was used to evaluate the quality of three SRC based on the perception of 320 caregivers. The one-proportion hypothesis test was used based on each AQSF-Neuroped item and dimension. The Weight of Evidence and Latent Class Analysis models were used to evaluate the influence of variables on the perception of quality. A mean overall quality score of 133±14 points indicated a positive perception of quality; however, there were aspects related to physical structure (Interpersonal Dimension) and access (Organizational Dimension II) that needed to be improved (p-values<0.05) to better meet the expectations of caregivers. By group formation, the LCA enabled identification of the caregivers' characteristics that determined either a positive or negative perspective of the quality. SRC B was best evaluated among all SRC (IV<0.10). Finally, managers are provided with results to support improvements in services.

Relación de la Dependencia, Discriminación y Variables Sociodemográficas de Personas en Situación de Discapacidad entre el Año 2015, 2017 y 2021 en Chile / Relationship of Dependency, Discrimination, and Sociodemographic Variables of People with Disabilities between the Years 2015, 2017, and 2021 in Chile

Introducción. La discapacidad se ha interpretado bajo diferentes puntos de vista a medida que pasan los años, convirtiéndose en un punto clave la mirada global para una correcta integración dentro de la sociedad, especialmente desde el punto de vista de la Kinesiología. Objetivo. analizar la población con discapacidad en Chile con respecto a las variables sociodemográficas (sexo y edad), en su estado de dependencia y discriminación desde el 2015 al 2021. Métodos. Estudio cuantitativo, descriptivo, en donde se identificaron y contrastaron dichas variables de las bases de datos secundarias ENDISC (II Estudio Nacional de la Discapacidad del 2015), CASEN (Encuesta de Caracterización Sociodemográfica del 2017) y EBS (Encuesta de Bienestar Social del 2021). Resultados. Existe mayor prevalencia de discapacidad en el género femenino entre los 18 a 34 años, mostrando relación entre el nivel de dependencia con edad y sexo en el 2015 y 2017 con mayor prevalencia hacia la independencia. Además, se establece relación entre la autopercepción de discriminación en personas con discapacidad de acuerdo con el sexo y la edad en el 2017 y 2021, mayor prevalencia al "No" sentirse discriminado. Discusión: A medida que aumenta la edad, aumenta con ella la discapacidad de la persona, sumado a la percepción de discriminación en diferentes esferas sociales, que limitan aún más el desarrollo de las personas con discapacidad. Conclusión. Es necesario de un estudio más enfocado en variables vinculadas con la discapacidad, de esta manera tener información estadística para lograr entablar diferentes políticas públicas en beneficio de la situación de discapacidad.

Background. Disability has been interpreted from different points of view as the years go by, with a global perspective becoming a key point for correct integration within society, especially from the point of view of Kinesiology. Aim. analyze the population with disabilities in Chile with respect to sociodemographic variables (sex and age), in their state of dependency and discrimination from 2015 to 2021. Methods. Quantitative, descriptive study, where these variables from the secondary databases ENDISC (II National Disability Study of 2015), CASEN (Sociodemographic Characterization Survey of 2017) and EBS (Social Wellbeing Survey of 2021) were identified and contrasted. Results. There is a higher prevalence of disability in women between 18 and 34 years of age, showing a relationship between the level of dependency with age and sex in 2015 and 2017 with a greater prevalence towards independence. In addition, a relationship is established between the self-perception of discrimination in people with disabilities according to sex and age in 2017 and 2021, a greater prevalence of "No" feeling discriminated against. Discussion. As age increases, the person's disability increases with it, added to the perception of discrimination in different social spheres, which further limit the development of people with disabilities. Conclusion. It is necessary to study more focused on variables linked to disability, in this way to have statistical information to establish different public policies to benefit the disability situation.

Considerações fenomenológicas sobre a percepção de si da criança/adolescente convivendo com irmão com deficiência / Phenomenological considerations regarding the self-perception of children/adolescents living with siblings with disabilities

Resumo O objetivo deste artigo é compreender a percepção de si de crianças/adolescentes que convivem com o irmão com deficiência. Pesquisa qualitativa, com abordagem hermenêutico-fenomenológica e participação de 20 crianças e adolescentes que convivem com o irmão com deficiência em um município do estado do Rio Grande do Sul, Brasil. Utilizou-se entrevista fenomenológica, diário de campo e interpretação hermenêutica. Evidenciaram-se lacunas de cuidado, necessidade de atenção, compreensão por parte da família, visto a atenção ser ao irmão com deficiência. O medo e a angústia da morte dos avós, da morte do irmão com deficiência, a saudade dos avós após sua morte. Percebe-se que essas crianças/adolescentes convivem e questionam o nascimento e a existência do irmão. Desvelou-se, ao dar luz ao mundo vivido da criança/adolescente, lacunas e fragilidades na relação com os pais, na atenção à saúde e nas situações de vulnerabilidades vivenciadas pela criança/adolescente e a família. Dessa forma, é necessário atenção a essa população, considerando que convivem com irmãos com deficiência e apresentam diversas vulnerabilidades que precisam ser discutidas, visando elaborações de estratégias de cuidado inclusivas e eficientes.

Abstract The scope of this article was to understand the self-perception of children/adolescents who live with siblings with disabilities. It involved qualitative research, with a hermeneutic-phenomenological approach, with 20 children and adolescents who live with a disabled sibling from a municipality in the state of Rio Grande do Sul/Brazil. Phenomenological interviews, field diaries and hermeneutic interpretations were used. There were gaps in care, need for attention and understanding on the part of the family, due to the attention given to the disabled sibling. Also, the fear and anguish of the death of the grandparents, the death of the disabled sibling, the nostalgia of the grandparents after their death. It was shown that these children/adolescents live together and question the birth and existence of the sibling. By shining a light on the child/adolescent's life experience, gaps and weaknesses in the relationship with parents, in health care, in situations of vulnerabilities experienced by the child/adolescent and family were revealed. Thus, attention needs to be devoted to this population, considering that they live with siblings with disabilities, and have several vulnerabilities that need to be discussed, aiming at developing inclusive and efficient care strategies.

El desarrollo psicomotor en niños menores de 5 años con cardiopatía congénita, Madre de Dios-Perú

A nivel mundial, la cardiopatía congénita en los niños es la malformación más común que puede tener un bebé al nacer. Objetivo. Analizar el comportamiento del desarrollo psicomotor de los niños menores a 5 años con cardiopatía congénita en la región de Madre de Dios, Perú. Materiales y métodos. Se consideró un enfoque cuantitativo, de tipo observacional analítica con diseño de cohorte prospectivo, con muestreo no probabilístico y una muestra de 6 infantes a quienes se aplicó el instrumento de recolección de información "observación del desarrollo psicomotor en niños con cardiopatía congénita". Resultados. El género del paciente varón en promedio es de 33.33%, la edad en promedio de los pacientes con cardiopatía congénita es de 2 años; el tipo de cardiopatía congénita de los pacientes es atresia pulmonar y estenosis aortica, mostrando un desarrollo psicomotor promedio de nivel medio; el tipo de cirugía desarrollado en el paciente en promedio es de tipo definitivo; alcanzando de esta manera una estancia hospitalaria de 16 a 30 días en promedio y alcanzando un estado nutricional promedio de desnutrición severa. Además, la relación entre el tipo de cardiopatía congénita con el desarrollo psicomotor es positiva, toda vez que, ante un incremento del desarrollo psicomotor de los pacientes, entonces los casos de cardiopatía congénita incrementan (ρ de Pearson =0.6919). Conclusiones. Se determinó que, en los pacientes estudiados el desarrollo psicomotor es de nivel medio; la misma que está relacionado por el tipo de cardiopatía congénita que tiene, donde el 33.33% de los pacientes presentan atresia pulmonar y el 16.67% tiene estenosis aortica; lo que demuestra que la relación entre el tipo de cardiopatía congénita con el desarrollo psicomotor es positiva o directa.

Worldwide, congenital heart disease in children is the most common malformation that an infant may have at birth. Objective. To analyze the behavior of psychomotor development in children under 5 years of age with congenital heart disease in the region of Madre de Dios, Peru. Materials and methods. A quantitative, analytical observational approach with prospective cohort design was considered, with non-probabilistic sampling and a sample of 6 infants to whom the data collection instrument "observation of psychomotor development in children with congenital heart disease" was applied. Results. The average gender of the male patient is 33.33%; the average age of the patients with congenital heart disease is 2 years; the type of congenital heart disease of the patients is pulmonary atresia and aortic stenosis, showing an average psychomotor development of medium level; the type of surgery developed in the patient on average is of definitive type; thus reaching a hospital stay of 16 to 30 days on average and reaching an average nutritional status of severe malnutrition. In addition, the relationship between the type of congenital heart disease and psychomotor development is positive, since, with an increase in the psychomotor development of the patients, the cases of congenital heart disease increase (Pearson's ρ =0.6919). Conclusions. It was determined that, in the patients studied, psychomotor development is of medium level; the same is related to the type of congenital heart disease they have, where 33.33% of the patients present pulmonary atresia and 16.67% have aortic stenosis; which shows that the relationship between the type of congenital heart disease and psychomotor development is positive or direct.

Em todo o mundo, a doença cardíaca congênita em crianças é a malformação mais comum que um bebê pode ter ao nascer. Objetivo. Analisar o comportamento do desenvolvimento psicomotor em crianças com menos de 5 anos de idade com cardiopatia congênita na região de Madre de Dios, no Peru. Materiais e métodos. Foi considerada uma abordagem observacional quantitativa e analítica, com um projeto de coorte prospectivo, amostragem não probabilística e uma amostra de 6 bebês aos quais foi aplicado o instrumento de coleta de dados "observação do desenvolvimento psicomotor em crianças com cardiopatia congênita". Resultados. O sexo médio do paciente masculino é de 33,33%, a idade média dos pacientes com cardiopatia congênita é de 2 anos; o tipo de cardiopatia congênita dos pacientes é atresia pulmonar e estenose aórtica, apresentando um desenvolvimento psicomotor médio de nível médio; o tipo de cirurgia desenvolvida no paciente é, em média, do tipo definitiva; atingindo, assim, uma permanência hospitalar de 16 a 30 dias, em média, e atingindo um estado nutricional médio de desnutrição grave. Além disso, a relação entre o tipo de cardiopatia congênita e o desenvolvimento psicomotor é positiva, pois, com o aumento do desenvolvimento psicomotor dos pacientes, aumentam os casos de cardiopatia congênita (ρ de Pearson = 0,6919). Conclusões. Foi determinado que, nos pacientes estudados, o desenvolvimento psicomotor é de nível médio; isso está relacionado com o tipo de cardiopatia congênita que eles têm, onde 33,33% dos pacientes têm atresia pulmonar e 16,67% têm estenose aórtica; o que mostra que a relação entre o tipo de cardiopatia congênita e o desenvolvimento psicomotor é positiva ou direta.

Anthropometric Characteristics, Handgrip Strength, and Upper Limb Asymmetries in Highly Trained Chilean Shot Put Para-Athletes / Características Antropométricas, Fuerza de Prensión Manual y Asimetrías de Miembros Superiores en Para-Atletas Chilenos de Lanzamiento de Bala Altamente Entrenados

SUMMARY: Anthropometric characteristics, including body size, shape, and composition, can have a significant impact on sports performance due to their influence on various physiological and biomechanical factors. However, limited research has been conducted on the anthropometric characteristics of highly trained throwing para-athletes. The purpose of this study was to describe the anthropometric characteristics, handgrip strength, and upper limb bilateral asymmetries of highly trained Chilean shot put para-throwers. Five male Chilean shot put para-athletes (average age of 38.8 ± 7.7 years) were assessed for their anthropometric characteristics, including skinfold thickness at six anatomical sites, girth at five sites, and bone breadth at two sites. Handgrip strength and bilateral asymmetries were also measured. The body mass and height of the athletes were found to be 90.5 ± 5.1 kg and 179.1 ± 8.9 cm, respectively. The athletes were found to have an endo-mesomorph somatotype (4.4-6.9-1.0) with high levels of fat mass (25.7 ± 2.8 %) and skeletal muscle mass (39.1 ± 3.7 %). The handgrip strength of the athletes was found to be 66.4 ± 6.7 kg with a bilateral asymmetry of 6.5 ± 6.2 %, with the dominant hand showing greater strength. The results indicate that the shot put para-athletes have a somatotype characterized by increased muscularity and body fat, along with a considerable stature. Although handgrip strength was found to be high, the athletes showed bilateral asymmetry, which requires further investigation to determine the cause and implications.

Las características antropométricas, incluido el tamaño, forma y composición del cuerpo, pueden tener un impacto significativo en el rendimiento deportivo debido a su influencia en diversos factores fisiológicos y biomecánicos. Sin embargo, las investigaciones sobre las características antropométricas para-atletas de lanzamiento altamente entrenados son limitadas. El propósito de este estudio fue describir las características antropométricas, la fuerza de prensión manual y las asimetrías bilaterales de miembros superiores de paralanzadores chilenos altamente entrenados en lanzamiento de la bala. Se evaluaron las características antropométricas de cinco atletas masculinos chilenos de lanzamiento de bala (edad promedio de 38,8 ± 7,7 años), incluido el grosor de los pliegues cutáneos en seis sitios anatómicos, la circunferencia en cinco sitios y la anchura de los huesos en dos sitios. También se midieron la fuerza de prensión manual y las asimetrías bilaterales. Se encontró que la masa corporal y la altura de los atletas eran 90,5 ± 5,1 kg y 179,1 ± 8,9 cm, respectivamente. Los atletas tenían un somatotipo endo-mesomorfo (4.4-6.9-1.0) con altos niveles de masa grasa (25.7 ± 2.8 %) y masa muscular esquelética (39.1 ± 3.7 %). Se encontró además que la fuerza de prensión manual de los atletas era de 66,4 ± 6,7 kg con una asimetría bilateral de 6,5 ± 6,2 %, mostrando mayor fuerza la mano dominante. Los resultados indican que los atletas de lanzamiento de bala tienen un somatotipo caracterizado por una mayor musculatura y grasa corporal, junto con una estatura considerable. Aunque se encontró que la fuerza de agarre era alta, los atletas mostraron asimetría bilateral, lo que requiere de más investigaciones para determinar las causa e implicaciones.

Experiencias de personas adultas con discapacidad intelectual sobre el derecho a la vida independiente: Un estudio de caso / Experiences of adults with intellectual disabilities on the right to independent living: A case study

Resumen En el ámbito de la discapacidad intelectual, el desarrollo de una vida independiente se ha configurado como un derecho humano y civil que permite a estas personas articular planes de vida deseados. Esta investigación analiza, mediante un estudio de caso, los significados que un grupo asesor compuesto por ocho personas adultas con discapacidad intelectual tiene sobre el concepto de vida independiente en el contexto chileno. Para la recopilación de los datos se diseñó una entrevista grupal semiestructurada acompañada de moodboards que facilitaron la verbalización de las respuestas. Sobre los relatos obtenidos a partir de las entrevistas se realizó un análisis de contenido temático. Los resultados muestran cómo el desempeño de una actividad laboral remunerada o el establecimiento de relaciones afectivas sólidas se conforman como elementos imprescindibles para la independencia personal. La dificultad para ser económicamente independientes o la falta de accesibilidad en el entorno laboral se identifican también como principales barreras para la concreción de este derecho. Igualmente, se destaca el rol que desempeñan la pareja y las amistades como figuras de apoyo constante a la independencia y al empoderamiento personal. Estos resultados sugieren algunas orientaciones para la planificación de intervenciones sobre este constructo, las cuales deben procurar la adquisición de habilidades que fortalezcan la capacidad de autocuidado de este colectivo, promover el incremento de oportunidades para la realización de elecciones significativas en el ámbito laboral, personal y comunitario, y adaptarse a los espacios en los que se desenvuelven las personas con discapacidad intelectual en la edad adulta.

Abstract In the field of intellectual disability, the development of an independent life has been configured as a human and civil right that allows these people to articulate desired life plans. Despite the advances, at the international level, research on aspects related to independent living in people with intellectual disabilities continues to be very scarce. Generally, the approaches to the study of this construct are based on broader investigations dedicated to evaluating the levels of quality of life or self-determination of this population in residential services or sheltered housing. Precisely, this study analyzes, through a case study, the meanings that an advisory group made up of eight adults with intellectual disabilities has on the concept of independent living in the Chilean context in order, on the one hand, to identify relevant elements for the definition of the construct from the perceptions and experiences of this population; and on the other, to propose guidelines at various levels that allow progress in the realization of this right. To collect the data, a semi-structured group interview was designed whose questions were grouped around four themes: previous conceptions of the participants about the construct of independent life, satisfaction with life and possibilities of the context for the development of personal independence, role of family, friendship and partner in independent life, and opportunities of the work context for the achievement of personal independence. During the interview, another strategy was incorporated in which visual language gained more relevance. Specifically, a set of ten moodboards were used that allowed participants to delve into the different topics addressed. The results of the code validation process were calculated using Krippendorff's alpha statistics (.954) and Cohen's kappa (.953), which showed a high level of inter-judge agreement. As a result of this process, categories (N = 6) and subcategories (N = 17) were established. The results show how various needs, barriers and facilitators for the development of independent life are identified from the interviews of the interviewees. Among the main needs is the performance of a paid work activity or the establishment of solid affective relationships. With regard to the barriers that hinder personal independence, the most notorious are related to the difficulty of being financially independent or to the lack of accessibility in the work environment. Regarding the elements that facilitate the development of an independent life, the role of the couple stands out as a constant figure of support for independence and personal empowerment. These results suggest some guidelines for planning interventions on this construct. Among others, they should seek the acquisition of skills that strengthen the self-care capacity of this group; should promote increased opportunities for making meaningful choices in the workplace, personal and community; and they must adapt to the spaces in which people with intellectual disabilities operate in adulthood. On the other hand, it is assumed that one of the main limitations of this research is that the results are not generalizable. However, this study has some strengths. Among others, it contributes to enriching the bulk of research on independent living, this being an aspect barely addressed in the literature. It also complements the results of other research regarding the elements that can condition the development of skills for personal independence. This allows for the design of interventions that provide opportunities for independent living based on the felt needs of these people. In addition, it raises future lines of research related, for example, to the importance of the informed choice of the residential environment or to the study of the possibilities of the digital world as an incident phenomenon in the acquisition of skills for personal independence.

Formación deportiva en estudiantes con discapacidades, una experiencia en la escuela especial "28 de Enero"

El deporte adaptado, referido al término de actividad física con niños que presentan algún tipo de discapacidad, tiene una evolución histórica relevante, pues desde sus orígenes enfrenta altos retos. Es reconocido que en escuelas de nivel internacional y específicamente en Cuba, se realizan esfuerzos por potenciar la inclusión en el deporte; sin embargo, se considera que todavía son insuficientes las propuestas que, desde el punto de vista científico y metodológico, sustentan el aprovechamiento de las competencias y el desarrollo de habilidades en las personas con discapacidad. Es por ello, que se propone como objetivo de este trabajo visualizar la captación de niños con potencialidades para practicar deportes, desde la Educación Física, en la escuela especial "28 de Enero". En esta investigación, se aplicó una encuesta a los estudiantes sobre sus gustos en materia de deporte y se realizó una caracterización, a partir de aplicación de test que midió la discapacidad intelectual y la discapacidad físico-motor en ellos. Los datos, de forma general, revelaron que con dedicación, superación y trabajo en equipo se pueden obtener resultados satisfactorios no solo en el rendimiento deportivo, sino en la autoestima y calidad de vida en estos estudiantes.

O esporte adaptado, referente ao termo de atividade física com crianças que apresentam algum tipo de deficiência, tem uma evolução histórica relevante, pois desde suas origens tem enfrentado grandes desafios. Reconhece-se que nas escolas, em nível internacional e especificamente em Cuba, estão sendo feitos esforços para promover a inclusão no esporte; no entanto, considera-se que as propostas que, do ponto de vista científico e metodológico, apoiam o uso de competências e o desenvolvimento de habilidades em pessoas com deficiência ainda são insuficientes. É por essa razão que o objetivo deste trabalho é visualizar o recrutamento de crianças com potencial para a prática esportiva, a partir da Educação Física, na escola especial "28 de Enero". Nessa pesquisa, foi aplicado um questionário aos alunos sobre seus gostos pelo esporte e realizada uma caracterização, a partir da aplicação de um teste que mediu a deficiência intelectual e a deficiência físico-motora neles. Os dados, em geral, revelaram que, com dedicação, autoaperfeiçoamento e trabalho em equipe, é possível obter resultados satisfatórios não só no desempenho esportivo, mas também na autoestima e na qualidade de vida desses alunos.

Adapted sport, referred to as the term physical activity with children who have some type of disability, has a relevant historical evolution, since from its origins it has faced high challenges. It is recognized that in international level schools and specifically in Cuba, efforts are made to promote inclusion in sport; however, it is considered that the proposals that, from the scientific and methodological point of view, support the use of skills and the development of skills in people with disabilities are still insufficient. For this reason, the objective of this work is to visualize the recruitment of children with the potential to practice sports, from Physical Education, in the special school "28 de Enero". In this research, a survey was applied to students about their likes in sports and a characterization was carried out, based on the application of a test that measured intellectual disability and physical-motor disability in them. The data, in general, revealed that with dedication, improvement and teamwork, satisfactory results can be obtained not only in sports performance, but also in self-esteem and quality of life in these students.

Guía metodológica: Pertinencia de Datos Poblacionales sobre Discapacidad para la Kinesiología / Methodological Guide: Relevance of Population-based Data on Disability for Physical Therapy

Introducción. El Estudio Nacional de la Discapacidad y Dependencia (ENDIDE) y el III Estudio Nacional de la Discapacidad (ENDISC) son investigaciones de relevancia en Chile que utilizan la estadística para comprender la situación de las personas con discapacidad en el país. Estos estudios recopilan datos cuantitativos y cualitativos sobre la discapacidad, permitiendo obtener información actualizada sobre su prevalencia, tipos de discapacidad, acceso a servicios y barreras enfrentadas. La utilización de la estadística en estos estudios es crucial para identificar necesidades, diseñar políticas inclusivas y evaluar el impacto de las intervenciones en la calidad de vida de las personas con discapacidad en Chile. Es relevante comprender las metodologías y pertinencia de estos datos para el desarrollo de la kinesiología, según indica la Convención sobre los Derechos de las Personas con discapacidad.

Background. The National Study on Disability and Dependency (ENDIDE) and the III National Study on Disability (ENDISC) are relevant investigations in Chile that use statistics to understand the situation of people with disabilities in the country. These studies collect quantitative and qualitative data on disability, allowing to obtain updated information on its prevalence, types of disability, access to services and barriers faced. The use of statistics in these studies is crucial to identify needs, design inclusive policies and assess the impact of explosions on the quality of life of people with disabilities in Chile. It is important to understand the methodologies and relevance of these data for the development of kinesiology, as indicated by the Convention on the Rights of Persons with Disabilities.

Developmental delay assessment in children < 5 years of age attended in the Pediatric Rehabilitation Service of a reference hospital in Peru / Evaluación del retraso del desarrollo en niños < 5 años atendidos en el Servicio de Rehabilitación Pediátrica de un hospital de referencia en Perú

Abstract Background: Child development is a complex biological, psychological, and emotional process. Timely screening for developmental delay allows early interventions. Therefore, this study sought to assess the frequency and characteristics of developmental delay in children < 5 years of age who attended the Pediatric Rehabilitation Service of a referral hospital in Peru. Methods: We conducted a cross-sectional study. Information was collected from medical records of children < 5 years of age who attended between April and September 2022 at the Rebagliati Hospital's Pediatric Rehabilitation Service. The REBA-PED Child Developmental Assessment Profile was used for the developmental assessment, which allows to identify the degree of delay in each area (gross motor, fine motor, hearing and language, intelligence and learning, and personal-social) and the presence of warning signs. Results: Of 226 children who attended the service, 49.1% were between 3 and 5 years old, 57.1% were female, only 3.1% were referred for suspected developmental delay, and none had had a previous developmental assessment. Among the children evaluated, 12.4% had a simple developmental delay, 19.5% had a significant developmental delay, and 53.5% had a global developmental delay. In addition, 70.8% presented a warning sign of developmental delay. Hearing and language (86.8%) and intelligence and learning (83.5%) areas had a higher frequency of significant developmental delay. Conclusions: We found a high frequency of developmental delay in the children assessed, predominantly in hearing and language. Although all the children were referred, none had had a previous developmental assessment.

Resumen Introducción: El desarrollo infantil es un proceso complejo de cambios biológicos, psicológicos y emocionales. El despistaje oportuno del retraso del desarrollo permite implementar intervenciones tempranas. Este estudio buscó evaluar la frecuencia y las características del retraso del desarrollo en niños < 5 años atendidos en el Servicio de Rehabilitación Pediátrica de un hospital de referencia de Perú. Métodos: Se llevó a cabo un estudio transversal en el que se recolectó información de niños < 5 años atendidos entre abril y septiembre del 2022 en el Servicio de Rehabilitación Pediátrica del Hospital Rebagliati, para lo cual se revisaron sus historias clínicas. Para la evaluación del desarrollo, se utilizó el Perfil de Evaluación del Desarrollo Infantil REBA-PED, que permite reconocer el grado de retraso por área (motora gruesa, motora fina, audición y lenguaje, inteligencia y aprendizaje, y personal social) y los signos de alarma. Resultados: De 226 niños atendidos, el 49.1% tenía entre 3 a 5 años, el 57.1% era de sexo femenino, solo el 3.1% fue remitido por sospecha de retraso del desarrollo y ninguno había tenido una evaluación previa del desarrollo infantil. Entre los niños evaluados, el 12.4% presentó un retraso simple del desarrollo, el 19.5% presentó un retraso significativo y el 53.5%, un retraso global. Además, el 70.8% presentó algún signo de alarma durante el desarrollo infantil. La frecuencia de retraso significativo fue mayor en las áreas de audición y lenguaje (86.8%) y de inteligencia y aprendizaje (83.5%) tuvieron mayor frecuencia de retraso significativo. Conclusiones: Se encontró una frecuencia elevada de retraso del desarrollo entre los niños evaluados, con predominio del área de audición y lenguaje. Si bien todos los niños fueron referidos, ninguno había tenido una evaluación previa del desarrollo.

Quality of life and labor inclusion of people with disabilities

Introduction: Disability is a generic term that includes deficits, limitations in activity and restrictions in participation indicate the negative aspects of the interaction between an individual and its contextual factors, environmental and personal factors. Objective: The objective of this study was to identify the characteristics of labor inclusion and health-related quality of life of people with disabilities in a population group from the city of Neiva (Colombia). Materials and methods: Descriptive, analytical, cross-sectional study with quantitative approach and non-experimental design, in a sample of 64 people with disabilities. Demographic variables such as age, sex, marital status, education, socioeconomic status, link to the social security system in health, and type of disability were considered. The WHOQOL-BREF, 2004 quality of life scale was applied. Central tendency measures were also calculated with their dispersions and 95% confidence intervals in the continuous quantitative variables. Results: The most frequent disability was physical with 78.13%, followed by visual with 17.18%. The highest percentage of impairment of the quality of life concerning disability is given by the need to move from one place to another, to feel dissatisfaction with their sexual life and the perception of an unhealthy environment. Conclusions: The main factors for the labor inclusion of a person with a disability are subject to sex, the type of disability, access to decent employment, and remuneration according to their potentialities.

Fragile X Syndrome in children

Fragile X syndrome is caused by the expansion of CGG triplets in the FMR1 gene, which generates epigenetic changes that silence its expression. The absence of the protein coded by this gene, FMRP, causes cellular dysfunction, leading to impaired brain development and functional abnormalities. The physical and neurologic manifestations of the disease appear early in life and may suggest the diagnosis. However, it must be confirmed by molecular tests. It affects multiple areas of daily living and greatly burdens the affected individuals and their families. Fragile X syndrome is the most common monogenic cause of intellectual disability and autism spectrum disorder; the diagnosis should be suspected in every patient with neurodevelopmental delay. Early interventions could improve the functional prognosis of patients with Fragile X syndrome, significantly impacting their quality of life and daily functioning. Therefore, healthcare for children with Fragile X syndrome should include a multidisciplinary approach.

El síndrome de X frágil es causado por la expansión de tripletas CGG en el gen FMR1, el cual genera cambios epigenéticos que silencian su expresión. La ausencia de la proteína codificada por este gen, la FMRP, causa disfunción celular, llevando a deficiencia en el desarrollo cerebral y anormalidades funcionales. Las manifestaciones físicas y neurológicas de la enfermedad aparecen en edades tempranas y pueden sugerir el diagnóstico. Sin embargo, este debe ser confirmado por pruebas moleculares. El síndrome afecta múltiples aspectos de la vida diaria y representa una alta carga para los individuos afectados y para sus familias. El síndrome de C frágil es la causa monogénica más común de discapacidad intelectual y trastornos del espectro autista; por ende, el diagnóstico debe sospecharse en todo paciente con retraso del neurodesarrollo. Intervenciones tempranas podrían mejorar el pronóstico funcional de pacientes con síndrome de X frágil, impactando significativamente su calidad de vida y funcionamiento. Por lo tanto, la atención en salud de niños con síndrome de X frágil debe incluir un abordaje multidisciplinario.

Desafios e perspectivas relacionados à ampliação do acesso da pessoa com deficiência à atenção básica / Challenges and perspectives related to expanding the access of people with disabilities to primary health / Desafíos y perspectivas relacionados con la ampliación del acceso de la persona con discapacidad a la atención primaria

A Rede de Cuidados à Pessoa com Deficiência, instituída em 2012, estabelece a atenção básica à saúde como elemento central para a garantia da integralidade e do acesso dessa população a serviços e ações em saúde, especialmente pela sua potencialidade enquanto coordenadora do cuidado. Os desafios para a efetivação da rede e consequente garantia do direito e acesso à saúde ainda persistem devido àdesarticulação dos serviços que a integram e à fragmentação das práticas de cuidado. Portanto, este ensaio tem como objetivo discutir alguns desafios e perspectivas relacionados à ampliação do acesso da pessoa com deficiência à atenção básica, de forma a fortalecer sua posição estratégica na rede. Superar as barreiras de acesso e garantia à saúde envolve refletir sobre novas estratégias, mas principalmente reconhecer aquelas já desenvolvidas e comprovadas ­ a exemplo do acolhimento e do apoio matricial ­, sem ignorar o contexto sociopolítico que ainda convoca à superação do recente processo de perda de direitos sociais, de desmonte de políticas educacionais, de inclusão e de saúde.

The Care Network for People with Disabilities, established in 2012, establishes primary health care as a central element to guarantee the integrality and access of this population to health services and actions, especially for its potential as a care coordinator. The challenges for the effectiveness of the network and consequent guarantee of the right and access to health and persists due to the disarticulation of the services that integrate it and to the fragmentation of care practices. Therefore, this essay aims to discuss some challenges and perspectives related to expanding access to primary health care for people with disabilities, to strengthen their strategic position in the network. Overcoming barriers to accessing and guaranteeing health involves reflecting on new strategies, but mainly recognizing those that have already been developed and proven ­ such as reception and matrix support ­, without ignoring the socio-political context that still calls for overcoming the recent process of loss of social rights, of dismantling educational, inclusion, and health policies.

La Red de Cuidados a las Personas con Discapacidad, que se constituyó en 2012, presenta la atención primaria de salud como un elemento central para garantizar la integralidad y el acceso de esta población a los servicios y acciones de salud, especialmente por su potencialidad como coordinadora de atención. Aún persisten los desafíos para la efectividad de la red y consecuente garantía del derecho a la salud y al acceso, debido a la desarticulación de los servicios que la integran y las prácticas asistenciales fragmentadas. Por lo tanto, este ensayo tiene como objetivo discutir algunos desafíos y perspectivas relacionados con la ampliación del acceso a la atención primaria de salud para las personas con discapacidad, con el fin de fortalecer su posición estratégica en la red. Superar las barreras para acceder y garantizar la salud implica reflexionar sobre nuevas estrategias, pero principalmente reconocer aquellas ya desarrolladas y probadas, como la acogida y el apoyo matricial, sin desconocer el contexto sociopolítico que aún exige superar el reciente proceso de desmantelamiento educativo y de las políticas de inclusión y salud, además de la pérdida de derechos sociales.

Inviabilidad de un régimen legal especial para la tenencia compartida de niños y niñas con discapacidad en el Perú / Unviability of a special legal regime for the shared custody of children with disabilities in Perú / Inviabilidade de um regime legal especial para a guarda compartilhada de meninos e meninas com incapacidade no Peru

En materia de Derecho de familia, la legislación peruana contempla la posibilidad de una tenencia compartida, regulada expresamente en el Código de los Niños y Adolescentes, sin establecer precisiones sobre las condiciones y formas de aplicación, lo que es similar en el Derecho comparado. Sustentado en principios bioéticos y jurídicos, en el presente artículo se analiza la posibilidad de generar una regulación especial para la tenencia compartida, enfocada en la necesidad de establecer criterios especiales que puedan tener en cuenta los jueces en los casos concretos que involucren a niños y niñas. Estos criterios deben partir de un modelo social dirigido a quebrar las barreras impuestas, dotando de las condiciones más adecuadas para un desarrollo integral y pleno. En esa línea de pensamiento, es fundamental el interés superior del niño, el compromiso de los progenitores y la implementación de ajustes razonables.

In terms of family law, Peruvian legislation contemplates the possibility of shared custody, expressly regulated in the Code of Children and Adolescents, without establishing details on the conditions and forms of application, which is similar in comparative law. Based on bioethical and legal principles, this article analyses the possibility of generating a special regulation for shared custody, focusing on the need to establish special criteria that judges can take into account in specific cases involving children. These criteria should be based on a social model aimed at breaking down the barriers imposed, providing the most appropriate conditions for an integral and full development. In this line of thought, the best interests of the child, the commitment of the parents and the implementation of reasonable accommodations are fundamental.

Em matéria de Direito de família, a legislação peruana contempla a possibilidade de uma guarda compartilhada, regulada expressamente no Código das Crianças e Adolescentes, sem estabelecer especificações sobre as condições e formas de aplicação, o que é similar no Direito comparado. Apoiado em princípios bioéticos e jurídicos, no presente artigo se analisa a possibilidade de gerar uma regulação especial para a guarda compartilhada, focada na necessidade de estabelecer critérios especiais que juízes possam ter em conta nos casos concretos que envolvem meninos e meninas. Esses critérios devem partir de um modelo social dirigido a quebrar as barreiras impostas, dotando as condições mais adequadas para um desenvolvimento integral e pleno. Nessa linha de pensamento, é fundamental o interesse superior da criança, o compromisso dos pais e a implementação de ajustes razoáveis.

O estreito acesso das Pessoas com Deficiência aos serviços de saúde em uma capital nordestina / The limited access of People with Disabilities to health services in a northeastern capital

Resumo Analisou-se, a partir das dimensões disponibilidade-acomodação e adequação, o acesso das Pessoas com Deficiência (PcD) aos serviços de atenção especializada. Trata-se de estudo de caso de abordagem qualitativa com triangulação de fontes a partir de pesquisa documental, dados dos Sistemas de Informações em Saúde e entrevistas semiestruturadas com gestores, profissionais de saúde e PcD. Observou-se a ampliação de serviços de reabilitação no Recife, embora não tenha sido possível analisar a capacidade de produção de tais serviços. Os achados apontam para a existência de barreiras arquitetônicas e urbanísticas e insuficiência de recursos nos serviços estudados. Ademais, há um longo tempo de espera para atenção especializada e um difícil acesso às tecnologias assistivas. Pôde-se observar ainda que os profissionais têm baixa qualificação para atender às necessidades das PcD e não se tem instituído um processo de educação permanente para os trabalhadores dos diversos níveis de complexidade. Conclui-se que a instituição da Politica Municipal de Atenção Integral à Saúde da PcD não foi suficiente para garantir o acesso aos serviços de saúde com continuidade do cuidado, considerando a permanência da fragmentação da rede de atenção, ferindo, assim, o direito à saúde deste segmento.

Abstract The access of People with Disabilities (PwD) to specialized care services was analyzed on the basis of the availability-accommodation and adequacy dimensions. This is a case study with a qualitative approach and triangulation of sources based on documentary research, data from the Health Information Systems and semi-structured interviews with managers, health professionals and PwD. There was an expansion of rehabilitation services in Recife, although it was not possible to analyze the production capacity of such services. The findings point to the existence of architectural and urban barriers and insufficient resources in the services studied. Furthermore, there is a long waiting time for specialized care and difficult access to assistive technologies. It was also observed that professionals have low qualifications to meet the needs of PwD and a process of permanent education in different levels of complexity has not been instituted for workers. The conclusion drawn is that the institution of the Municipal Policy of Comprehensive Health Care for the PwD was insufficient to guarantee access to health services with continuity of care, considering the permanence of the fragmentation of the care network, thus violating the right to health of this segment.