Un análisis integrado entre la calidad de vida y las necesidades de apoyo de personas adultas con discapacidad intelectual en Chile / An integrated analysis between the quality of life and the support needs of adults with intellectual disabilities in Chile

El paradigma de apoyos y el de calidad de vida se han transformado en guías fundamentales para los avances en el ámbito de la discapacidad intelectual (DI). Con base en una muestra de 93 personas adultas con DI, se analiza, desde un enfoque cuantitativo no experimental, la relación entre la calidad de vida y las necesidades de apoyo, aplicando la escala INICO-FEAPS y la escala de Intensidad de Apoyos (SIS) para cada constructo. Los principales resultados evidencian que existe una relación fuerte e indirecta entre calidad de vida y necesidades de apoyos, y también la relevancia de analizar dichos resultados desde variables como grado de discapacidad, sexo o nivel socioeconómico. La discusión permite inferir la necesidad de discutir nuevas estrategias en torno a categorías como el grado de discapacidad, la autodeterminación e inclusión social, como elementos facilitadores de la calidad de vida y apoyos desde un enfoque integral que contribuya al desarrollo de estrategias de programas sociales para la población con DI. (AU)

The support paradigm and the quality of life paradigm have become fundamental guides for progress in the field of Intellectual Disability (ID). Based on a sample of 93 adults with ID, the relationship between Quality of Life and Support Needs is analyzed from a non-experimental quantitative approach, applying the INICO-FEAPS scale and the SIS Support Intensity scale for each construct. The main results show that there is a strong and indirect relationship between quality of life and support needs, and the relevance of analyzing these results from variables such as the degree of disability, sex or socioeconomic level. The discussion allows us to infer the need to discuss new strategies around categories such as the degree of disability, self-determination and social inclusion, as facilitating elements of quality of life and supporting a comprehensive approach that contributes to the development of social program strategies for the population with ID. (AU)

Beneficios y limitaciones de la planificación centrada en la persona en el campo de la discapacidad intelectual y del desarrollo: una revisión sistemática según las directrices de PRISMA / Benefits and limitations of person-centered planning in the field of intellectual and developmental disabilities: a systematic review according to PRISMA guidelines

La metodología de Planificación Centrada en la Persona (PCP) cada vez tiene mayor impacto en España. Comenzando desde las distintas legislaciones que regulan la atención a este colectivo en las diferentes autonomías y terminando en los centros que proveen este servicio. No obstante, existe escasa literatura internacional de estudios empíricos a grandes escalas que sitúen este enfoque metodológico en una posición relevante que garantice la eficacia de la PCP. El objetivo principal de este estudio es conocer el estado del uso de la metodología de PCP a través de estudios avalados empíricamente que sostengan tanto beneficios como limitaciones durante los últimos 10 años (2012-2022). Para ello, se ha realizado una revisión sistemática desde las directrices de PRISMA (2020), que incluye un total de 31 artículos. Como conclusión, se han descubierto más beneficios que limitaciones entre las que destacan las ventajas en su uso para las personas con discapacidad intelectual y del desarrollo y las mejoras de aspectos relacionados con la autodeterminación. No obstante, las limitaciones prevalecen por la falta de apoyos y recursos adecuados de las organizaciones para responder a una planificación centrada en la persona y la necesidad de formación de las personas implicadas en la elaboración de la PCP, lo que genera la incógnita de si se están realizando buenas prácticas en el uso de dicha metodología. (AU)

The methodology of Person Centered Planning (PCP) is having an increasing impact in Spain. Starting from the different legislations that regulate the attention to this group in the different autonomous regions and ending in the centers that provide this service. However, there is little international literature on large-scale empirical studies that place this methodological approach in a relevant position to guarantee the efficacy of PCP. The main objective of this study is to know the status of the use of PCP methodology through empirically supported studies that sustain both benefits and limitations during the last 10 years (2012-2022). For this purpose, a systematic review has been conducted since the PRISMA guidelines (2020), including a total of 31 articles. As a conclusion, more benefits than limitations have been found, among which the advantages in its use for people with intellectual and developmental disabilities and improvements in aspects related to self-determination stand out. However, limitations prevail due to the lack of adequate support and resources from organizations to respond to person-centered planning and the need for training of the people involved in the development of the PCP, which raises the question of whether good practices are being carried out in the use of this methodology. (AU)

Un análisis integrado entre la calidad de vida y las necesidades de apoyo de personas adultas con discapacidad intelectual en Chile / An integrated analysis between the quality of life and the support needs of adults with intellectual disabilities in Chile

El paradigma de apoyos y el de calidad de vida se han transformado en guías fundamentales para los avances en el ámbito de la discapacidad intelectual (DI). Con base en una muestra de 93 personas adultas con DI, se analiza, desde un enfoque cuantitativo no experimental, la relación entre la calidad de vida y las necesidades de apoyo, aplicando la escala INICO-FEAPS y la escala de Intensidad de Apoyos (SIS) para cada constructo. Los principales resultados evidencian que existe una relación fuerte e indirecta entre calidad de vida y necesidades de apoyos, y también la relevancia de analizar dichos resultados desde variables como grado de discapacidad, sexo o nivel socioeconómico. La discusión permite inferir la necesidad de discutir nuevas estrategias en torno a categorías como el grado de discapacidad, la autodeterminación e inclusión social, como elementos facilitadores de la calidad de vida y apoyos desde un enfoque integral que contribuya al desarrollo de estrategias de programas sociales para la población con DI. (AU)

The support paradigm and the quality of life paradigm have become fundamental guides for progress in the field of Intellectual Disability (ID). Based on a sample of 93 adults with ID, the relationship between Quality of Life and Support Needs is analyzed from a non-experimental quantitative approach, applying the INICO-FEAPS scale and the SIS Support Intensity scale for each construct. The main results show that there is a strong and indirect relationship between quality of life and support needs, and the relevance of analyzing these results from variables such as the degree of disability, sex or socioeconomic level. The discussion allows us to infer the need to discuss new strategies around categories such as the degree of disability, self-determination and social inclusion, as facilitating elements of quality of life and supporting a comprehensive approach that contributes to the development of social program strategies for the population with ID. (AU)

Beneficios y limitaciones de la planificación centrada en la persona en el campo de la discapacidad intelectual y del desarrollo: una revisión sistemática según las directrices de PRISMA / Benefits and limitations of person-centered planning in the field of intellectual and developmental disabilities: a systematic review according to PRISMA guidelines

La metodología de Planificación Centrada en la Persona (PCP) cada vez tiene mayor impacto en España. Comenzando desde las distintas legislaciones que regulan la atención a este colectivo en las diferentes autonomías y terminando en los centros que proveen este servicio. No obstante, existe escasa literatura internacional de estudios empíricos a grandes escalas que sitúen este enfoque metodológico en una posición relevante que garantice la eficacia de la PCP. El objetivo principal de este estudio es conocer el estado del uso de la metodología de PCP a través de estudios avalados empíricamente que sostengan tanto beneficios como limitaciones durante los últimos 10 años (2012-2022). Para ello, se ha realizado una revisión sistemática desde las directrices de PRISMA (2020), que incluye un total de 31 artículos. Como conclusión, se han descubierto más beneficios que limitaciones entre las que destacan las ventajas en su uso para las personas con discapacidad intelectual y del desarrollo y las mejoras de aspectos relacionados con la autodeterminación. No obstante, las limitaciones prevalecen por la falta de apoyos y recursos adecuados de las organizaciones para responder a una planificación centrada en la persona y la necesidad de formación de las personas implicadas en la elaboración de la PCP, lo que genera la incógnita de si se están realizando buenas prácticas en el uso de dicha metodología. (AU)

The methodology of Person Centered Planning (PCP) is having an increasing impact in Spain. Starting from the different legislations that regulate the attention to this group in the different autonomous regions and ending in the centers that provide this service. However, there is little international literature on large-scale empirical studies that place this methodological approach in a relevant position to guarantee the efficacy of PCP. The main objective of this study is to know the status of the use of PCP methodology through empirically supported studies that sustain both benefits and limitations during the last 10 years (2012-2022). For this purpose, a systematic review has been conducted since the PRISMA guidelines (2020), including a total of 31 articles. As a conclusion, more benefits than limitations have been found, among which the advantages in its use for people with intellectual and developmental disabilities and improvements in aspects related to self-determination stand out. However, limitations prevail due to the lack of adequate support and resources from organizations to respond to person-centered planning and the need for training of the people involved in the development of the PCP, which raises the question of whether good practices are being carried out in the use of this methodology. (AU)

Resultados a largo plazo del tratamiento de la degeneración macular asociada a la edad neovascular mediante fármacos antiangiogénicos: revisión de la bibliografía / Long-term results of treatment of neovascular age-related macular degeneration using antiangiogenic drugs: A review of the literature

La degeneración macular asociada a la edad (DMAE) constituye una de las principales causas de la pérdida de agudeza visual (AV) en los mayores de 50 años en el mundo, siendo la DMAE neovascular (DMAEn) la causante del 80% de los casos de pérdida de visión severa debido a esta enfermedad. Hace ya más de una década que se emplean los fármacos antifactor de crecimiento del endotelio vascular (anti-VEGF) para el tratamiento de esta enfermedad, cambiando drásticamente el pronóstico visual de estos pacientes. Sin embargo, los primeros estudios de los que se disponían datos de los resultados eran a corto plazo. En la actualidad existen ya diferentes series publicadas de los resultados de la DMAE a largo plazo tras el tratamiento con anti-VEGF, siendo el objetivo de la presente revisión sintetizar dichos resultados. El seguimiento medio de los estudios incluidos fue de 8,2 años (rango: 5-12 años). La AV inicial media fue 55,3 letras del Early Treatment Diabetic Retinopathy Study (ETDRS) (rango: 45,6-65) siendo la AV final media 50,1 letras (rango: 33,0-64,3), existiendo una pérdida media de 5,2 letras. Al final del seguimiento un 29,4% de los pacientes mantuvieron una AV>70 letras. El 67,9% de los pacientes se mantuvo estable al final del seguimiento (<15 letras de pérdida), existiendo una pérdida severa (≥15 letras) del 30,1%. La fibrosis y la atrofia fueron las principales causas de pérdida de AV a largo plazo, presentándose al final del seguimiento en un 52,5% y un 60,5%, respectivamente.(AU)

Age-related macular degeneration (AMD) is one of the main causes of visual acuity (VA) loss in people over 50 years of age worldwide, with neovascular AMD (nAMD) accounting for 80% of cases of severe vision loss due to this disease. Anti-vascular endothelial growth factor (anti-VEGF) drugs have been used for the treatment of this disease for more than a decade, changing drastically the visual prognosis of these patients. However, initial studies reporting data on outcomes were short term. Currently, there are different series published on the long-term results of AMD after treatment with anti-VEGF, and the aim of this review is to synthesize these results. The mean follow-up of the included studies was 8.2 years (range 5-12 years). The mean initial VA was 55.3 letters in the Early Treatment Diabetic Retinopathy Study (ETDRS) (range 45.6-65) and the mean final VA was 50.1 letters (range 33.0-64.3), with a mean loss of 5.2 letters. At the end of follow-up, 29.4% of the patients maintained a VA>70 letters. The 67.9% of patients remained stable at the end of follow-up (<15 letter loss), with a severe loss (≥15 letters) of 30.1%. Fibrosis and atrophy were the main causes of long-term VA loss, occurring at the end of follow-up in 52.5% and 60.5%, respectively.(AU)

Violence Exposure and Disability in Colombian Female Survivors of Intimate Partner Violence: the Mediating Role of Depressive Symptoms.

BACKGROUND: Violence is an important public health problem and one of the main causes of deaths worldwide. The mental health consequences of surviving intimate partner violence (IPV) include depression, anxiety and post-traumatic stress disorder. Previous studies have identified that there is a relationship between depression and level of disability in female survivors of IPV. Estimating the direct, indirect or total effect of an exposure on an outcome makes it possible to identify mediating effects between a group of variables. Detecting mediation effects is useful for identifying casual pathways that generate a final outcome and provides a rationale for designing interventions to target the mediator, which in turn positively affects the outcome. The objective was to identify the mediating role of depressive symptoms on the relationship between IPV and disability. METHODS: This was a cross-sectional study of 94 women over the age of 18 who were survivors of IPV by men. They were recruited from two public hospitals in Cali and Tuluá in southwest Colombia. An analysis of casual relationships was performed using structural equation modelling that was made up of: four exogenous observed variables (age, current relationship status [in a relationship or single], level of schooling, and history of an impairment), intermediate endogenous variables (violence and depressive symptoms), and the main endogenous variable (disability). The analyses were carried out in Stata14.2. RESULTS: The direct effect of IPV severity on the level of disability was not statistically significant (ß=0.09; P=0.63). However, the indirect effect of IPV severity on disability mediated by depressive symptoms was (ß=0.39; P<0.01). The total effect of IPV severity on the level of disability was even greater (ß=0.48; P=0.01). CONCLUSIONS: This study found a complete mediating role of depressive symptoms on the relationship between the severity of IPV and the level of disability for the female participants in this study. The results of this research contribute to defining strategies to prevent and address intimate partner violence, depressive symptoms and disability in this population.

Primer caso reportado en Panamá de: Síndrome de Baraitser Winter

El síndrome cerebro-frontal-facial de Baraitser-Winter (BWCFF) se origina a partir de mutaciones sin sentido, heterocigóticas, en uno de los dos genes ubicuos que codifican la actina citoplásmica, ya sea ACTB o ACTG1. Este síndrome es una combinación de malformaciones faciales y cerebrales. Entre las malformaciones faciales que podemos observar, destacan el coloboma de iris, la ptosis bilateral, el hipertelorismo, el puente nasal ancho y los pliegues epicánticos prominentes. Las malformaciones cerebrales incluyen la paquigiria, la heterotopia de banda subcortical y las anomalías del cuerpo calloso. En este contexto, presentamos el caso de una niña de 11 años que presentaba algunos rasgos faciales distintivos, además de malformaciones cerebrales, baja estatura, discapacidad cognitiva moderada, y retraso del habla y lenguaje. Mediante secuenciación por exoma clínico dirigido, se identificó una variante sin sentido heterocigota de Novo en ACTB: c.617G>A (p. Arg206Gln). (provisto por Infomedic International)

The Baraitser-Winter cerebral-front-facial syndrome (BWCFF) is caused by heterozygous nonsense mutations in one of the two ubiquitous genes encoding cytoplasmic actin, either ACTB or ACTG1. The syndrome combines facial and cerebral malformations. Among the facial malformations that can be observed are iris coloboma, bilateral ptosis, hypertelorism, broad nasal bridge, and prominent epicanthic folds. The cerebral malformations include pachygyria, subcortical band heterotopia, and anomalies of the corpus callosum. We present the case of an 11-year-old girl who had some distinctive facial features, as well as cerebral malformations, short stature, moderate cognitive disability, and speech and language delay. Targeted clinical exome sequencing identified a heterozygous de novo nonsense variant in ACTB: c.617G>A (p. Arg206Gln). (provided by Infomedic International)

Estado de los exdeportistas en situaciones de discapacidad físico-motora: la necesidad del desentrenamiento deportivo

El desentrenamiento deportivo es un proceso esencial, para garantizar una transición fluida a los exdeportistas, de un periodo prolongado de vida deportiva a una vida posdeportiva. En este sentido, la investigación tuvo como objetivo determinar el estado actual que presenta el proceso de desentrenamiento de exdeportistas en situaciones de discapacidad físico-motora, en la provincia El Oro. Para el estudio, se seleccionaron, a través de un muestreo aleatorio simple, a ocho exdeportistas en situaciones de discapacidad físico-motora. Los exdeportistas tienen una experiencia promedio en el ámbito deportivo de 8.38 (± 4.92) años. También se interactuó con entrenadores, profesores de Educación Física, médicos, psicológicos, familiares y directivos. Se aplicaron encuestas a todos los participantes en el estudio, y solo a los exdeportistas pruebas antropométricas, médicas, de laboratorios y funcionales. Entre los resultados obtenidos, se pudo identificar que existen limitaciones para afrontar el desentrenamiento como un proceso formativo, pedagógico y social, que los deportistas retirados no cuentan con información suficiente sobre este proceso y tienen carencia de proyectos significativos, por lo que se revela la necesidad de diseñar un proceso de desentrenamiento, ajustado a sus necesidades específicas.

O destreinamento esportivo é um processo essencial para garantir uma transição tranquila para ex-atletas de um período prolongado de vida esportiva para uma vida pós-esportiva. Nesse sentido, a pesquisa teve como objetivo determinar o estado atual do processo de destreinamento de ex-atletas em situações de deficiência físico-motora na província de El Oro. Para o estudo, foram selecionados oito ex-atletas com deficiências físico-motoras por meio de amostragem aleatória simples. Os ex-atletas têm uma média de 8,38 (± 4,92) anos de experiência em esportes. Também interagimos com treinadores, professores de educação física, médicos, psicólogos, familiares e gerentes. Foram aplicados questionários a todos os participantes do estudo, e testes antropométricos, médicos, laboratoriais e funcionais foram aplicados somente aos ex-atletas. Entre os resultados obtidos, foi possível identificar que há limitações em lidar com o destreinamento como processo formativo, pedagógico e social, que os atletas aposentados não têm informações suficientes sobre esse processo e que carecem de projetos significativos, revelando, assim, a necessidade de se desenhar um processo de destreinamento ajustado às suas necessidades específicas.

Sports detraining is an essential process to guarantee a smooth transition for former athletes from a prolonged period of sports life to a post-sports life. In this sense, the objective of the research was to determine the current state of the detraining process of former athletes in situations of physical-motor disability, in the province of El Oro. For the study, through simple random sampling, eight former athletes in situations of physical-motor disability were selected. Former athletes have an average experience in the sports field of 8.38 (± 4.92) years. There was also interaction with coaches, Physical Education teachers, doctors, psychologists, family members and managers. Surveys were administered to all participants in the study, and anthropometric, medical, laboratory and functional tests were administered only to former athletes. Among the results obtained, it was possible to identify that there are limitations to face detraining as a training, pedagogical and social process, that retired athletes do not have sufficient information about this process and have a lack of significant projects, which is why it is revealed the need to design a detraining process, tailored to their specific needs.

La superación del profesor de Educación Física para desarrollar la autodeterminación, en educandos con discapacidad intelectual

La superación continua de los profesores de Educación Física constituye una necesidad que ha transcendido diferentes generaciones de docentes, determinada por el desarrollo creciente de la ciencia y la técnica, las exigencias del tercer perfeccionamiento educacional cubano, las demandas en la preparación y capacitación del profesorado y la necesidad de su incidencia en la formación de un egresado apto y capaz de desarrollar no solo habilidades y capacidades físicas, sino también para la vida, que les permitan actuar en el medio social, familiar y laboral. El objetivo de esta investigación consistió en diseñar una estrategia pedagógica de superación para transformar los modos de actuación de los profesores de Educación Física, en la dirección del proceso de enseñanza-aprendizaje, en función del desarrollo de habilidades de autodeterminación en los educandos en situación de discapacidad intelectual. Los métodos investigativos utilizados en el orden teórico y empírico fueron el análisis y síntesis, el histórico-lógico, el inductivo-deductivo, la modelación y el sistémico-estructural-funcional; además de la entrevista, la observación, la encuesta, el análisis de documentos, el criterio de expertos y la triangulación múltiple, los que permitieron revelar las causales que inciden en el normal desarrollo de las habilidades de autodeterminación, así como elaborar la estrategia. Con su implementación se perfeccionó el desempeño profesional y personal de los profesores y los educandos, quienes egresaron con el empoderamiento de habilidades para la toma de decisiones, la realización de elecciones, la resolución de problemas y el establecimiento de metas y objetivos.

O aperfeiçoamento contínuo dos professores de Educação Física constitui uma necessidade que transcendeu as diferentes gerações de professores, determinada pelo crescente desenvolvimento da ciência e da tecnologia, pelas exigências do terceiro melhoramento educacional cubano, pelas exigências na preparação e formação de professores e pela necessidade de seu impacto na formação de um egresso qualificado, capaz de desenvolver não apenas competências e habilidades físicas, mas também para a vida, que lhe permitam atuar no ambiente social, familiar e de trabalho. Discapacidade intelectual. Os métodos investigativos utilizados na ordem teórica e empírica foram análise e síntese, histórico-lógico, indutivo-dedutivo, modelagem e sistêmico-estrutural-funcional; Além da entrevista, observação, inquérito, análise documental, peritagem e triangulação múltipla, que permitiram revelar as causas que afetam o normal desenvolvimento das competências de autodeterminação, bem como desenvolver a estratégia. Com a sua implementação melhorou-se o desempenho profissional e pessoal de professores e alunos, que se formaram com a capacitação de competências para tomar decisões, fazer escolhas, resolver problemas e estabelecer metas e objetivos.

The continuous improvement of Physical Education teachers constitutes a need that has transcended different generations of teachers, determined by the growing development of science and technology, the demands of the third Cuban educational improvement, the demands in the preparation and training of teachers and the need for its impact on the training of a qualified graduate capable of developing not only physical skills and abilities, but also for life, which allow them to act in the social, family and work environment. The objective of this research was to design a pedagogical improvement strategy to transform the modes of action of Physical Education teachers, in the direction of the teaching-learning process, based on the development of self-determination skills in students in situations of intellectual disability. The investigative methods used in the theoretical and empirical order were analysis and synthesis, historical-logical, inductive-deductive, modeling and systemic-structural-functional; In addition to the interview, observation, survey, document analysis, expert judgment and multiple triangulations, which allowed us to reveal the causes that affect the normal development of self-determination skills, as well as to develop the strategy. With its implementation, the professional and personal performance of teachers and students was improved, who graduated with the empowerment of skills for making decisions, making choices, solving problems and establishing goals and objectives.

Juegos recreativos para la inclusión de estudiantes con discapacidad física, en las clases de Educación Física

Los juegos recreativos fomentan el desarrollo psicosocial, motor y cognitivo y promueven la igualdad de oportunidades y la participación activa de los estudiantes. Al ser utilizados en la Educación Física, intervienen en la educación y formación integral, pues facilitan en los estudiantes el desarrollo de destrezas y capacidades, promueven la inclusión, responden a la diversidad y las necesidades e incrementan la participación en este contexto. El estudio que se presenta tuvo como objetivo desarrollar un sistema de juegos recreativos para la inclusión de los estudiantes con discapacidad física, en las clases de Educación Física del sexto año de básica, de la Unidad Educativa Físico-misional "Mercedes de Jesús Molina". La investigación tuvo un enfoque mixto y se utilizó una muestra de 19 estudiantes del sexto año. Se emplearon métodos como el histórico-lógico, analítico-sintético, inductivo-deductivo y el sistémico para analizar y comprender los hechos y establecer relaciones lógicas; se emplearon métodos empíricos, como la observación, la encuesta, el método de criterio de especialistas, para comprobar la validez y fiabilidad de la propuesta. Para el procesamiento e interpretación de los datos, representados en tablas y figuras, se utilizó la estadística descriptiva, con el cálculo porcentual. La propuesta de juegos recreativos resultó ser una herramienta fundamental, al fomentar la inclusión, la integración y la convivencia, sin importar la discapacidad, ello beneficia el presente y futuro de los estudiantes en la sociedad y realza el alcance de la propuesta.

Os jogos recreativos estimulam o desenvolvimento psicossocial, motor e cognitivo e promovem a igualdade de oportunidades e a participação ativa dos alunos. Quando utilizados na Educação Física, intervêm na educação e formação integral, pois facilitam o desenvolvimento de competências e habilidades nos alunos, promovem a inclusão, respondem à diversidade e às necessidades e aumentam a participação neste contexto. O objetivo do estudo apresentado foi desenvolver um sistema de jogos lúdicos para inclusão de alunos com deficiência física nas aulas de Educação Física do sexto ano do ensino básico, da Unidade Educacional Físico-Missional "Mercedes de Jesús Molina". A pesquisa teve abordagem mista e utilizou-se uma amostra de 19 alunos do sexto ano. Métodos como histórico-lógico, analítico-sintético, indutivo-dedutivo e sistêmico foram utilizados para analisar e compreender os fatos e estabelecer relações lógicas; Foram utilizados métodos empíricos, como observação, levantamento e método de julgamento especializado, para verificar a validade e confiabilidade da proposta. Para o processamento e interpretação dos dados, representados em tabelas e figuras, utilizou-se estatística descritiva, com cálculo percentual. A proposta de jogos recreativos revelou-se uma ferramenta fundamental, promovendo a inclusão, a integração e a convivência, independentemente da deficiência, o que beneficia o presente e o futuro dos alunos na sociedade e aumenta o alcance da proposta.

Recreational games encourage psychosocial, motor and cognitive development and promote equal opportunities and active participation of students. When used in Physical Education, they intervene in comprehensive education and training, as they facilitate the development of skills and capacities in students, promote inclusion, respond to diversity and needs, as well as increase participation in this context. The study presented had as the objective to develop a system of recreational games for the inclusion of students with physical disabilities in the Physical Education classes of the sixth year of basic education, of the "Mercedes de Jesús Molina" Physical-Missional Educational Unit. The research had a mixed approach and a sample of 19 sixth year students was used. Methods such as historical-logical, analytical-synthetic, inductive-deductive and systemic were used to analyze and understand the facts and establish logical relationships; empirical methods were used, such as observation, survey, and specialist criterion method, to verify the validity and reliability of the proposal. For the processing and interpretation of the data, represented in tables and figures, descriptive statistics was used, with percentage calculation. The proposal for recreational games turned out to be a fundamental tool, promoting inclusion, integration and coexistence, regardless of disability, which benefits the present and future of students in society and enhances the scope of the proposal.

La preparación especial de fuerza rápida en balistas con discapacidad físico-motriz por amputación

En el Campeonato Nacional de Paratletismo, en Cuba, los resultados competitivos de las balistas con discapacidad físico-motriz por amputación muestran un decrecimiento, en varias categorías. Se detectaron insuficiencias en la dosificación de las cargas, en la utilización de métodos, medios y procedimientos; además de una inadecuada orientación metodológica. Se trazó como objetivo diseñar una metodología para la planificación de la capacidad fuerza rápida en la etapa de preparación especial de balistas con discapacidad físico-motriz por amputación. Se realizó una investigación de tipo descriptiva y cuantitativa en el periodo comprendido entre el 2019-2022, el estudio se centró en el proceso de planificación y entrenamiento de la fuerza rápida en la etapa de preparación especial analizado y descrito, a través de métodos empíricos como la revisión de documentos, encuesta, entrevista y la triangulación metodológica, ello permitió evaluar su estado actual. Colaboraron como muestra atletas, entrenadores y directivos de nivel provincial y nacional. La metodología propuesta es viable y factible, con una efectividad esperada para el contexto deportivo actual y con posibilidades de generalización en otros eventos de lanzamiento. La propuesta diseñada enriquece la teoría del entrenamiento deportivo en atletas con discapacidad.

Nos Campeonatos Nacionais de Paratletismo em Cuba, os resultados competitivos dos balistas com deficiências físico-motoras por amputação mostram uma diminuição em várias categorias. Foram detectadas insuficiências na dosagem de cargas, no uso de métodos, meios e procedimentos, bem como uma orientação metodológica inadequada. O objetivo foi elaborar uma metodologia para o planejamento da capacidade de força rápida na fase de preparação especial de balistas com deficiência físico-motora decorrente de amputação. Foi realizada uma pesquisa descritiva e quantitativa no período entre 2019-2022, o estudo focou no processo de planejamento e treinamento da força rápida na fase de preparação especial analisada e descrita, por meio de métodos empíricos como revisão de documentos, pesquisa, entrevista e triangulação metodológica, o que permitiu avaliar seu estado atual. Atletas, técnicos e gerentes em nível provincial e nacional colaboraram como amostra. A metodologia proposta é viável e factível, com uma eficácia esperada para o contexto esportivo atual e com possibilidades de generalização em outros eventos de arremesso. A proposta elaborada enriquece a teoria do treinamento esportivo em atletas com deficiências.

In the National Para-Athletics Championship in Cuba, the competitive results of shot put athletes with physical-motor disabilities due to amputation show a decrease in several categories. Deficiencies were detected in the dosage of loads, in the use of methods, means and procedures; in addition to inadequate methodological guidance. The objective was to design a methodology for planning rapid strength capacity in the special preparation stage of shot put athletes with physical - motor disabilities due to amputation. A descriptive and quantitative research was carried out in the period between 2019-2022, the study focused on the planning and training process of rapid strength in the special preparation stage analyzed and described, through empirical methods such as the review of documents, survey, interview and methodological triangulation made it possible to evaluate its current state. Athletes, coaches and managers from provincial and national levels collaborated as a sample. The proposed methodology is viable and feasible, with expected effectiveness for the current sporting context and with possibilities of generalization in other throwing events. The designed proposal enriches the theory of sports training in athletes with disabilities.

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.

Disability Degree Assessment: A Comprehensive Approach According to Royal Decree 888/2022. / Evaluación del grado de discapacidad: un enfoque integral según el Real Decreto 888/2022.

BACKGORUND AND OBJECTIVE: Royal Decree 888/2022 establishes that the evaluation of disability situations is carried out by multiprofessional teams responsible for assessing and recognizing the degree of disability. The participation of professionals in the healthcare and social fields can be valuable in providing reports from which the necessary data for the proper assessment of disability can be obtained, with the ultimate goal of providing comprehensive assistance to people with disabilities. MATERIALS AND METHODS: An analysis and summary of Royal Decree 888/2022, which has recently come into effect, is performed, focusing on the most relevant aspects for professionals in the healthcare and social fields. RESULTS: The recognition and classification of the degree of disability are the responsibility of the autonomous communities, and the assessments are issued by multiprofessional teams. To do this, four components are evaluated using the criteria outlined in the annexes of the Royal Decree itself. Each criterion generates a score that is combined to obtain a single score, the Final Disability Degree of the Person. CONCLUSIONS: The pathology that causes the disability must have been previously diagnosed by the Healthcare System and considered permanent. Its evaluation is based on the evidence of objective clinical findings that are documented and supported by clinical reports. For this reason, it is important to maintain an accurate medical history, document reviews, and provide all relevant evidence.

Mediação de saberes na sobrevivência ao câncer de laringe: a experiência de pessoas Laringectomizadas Totais / Mediation of knowledge in surviving laryngeal cancer: the experience of Total Laryngectomized persons / Mediación del conocimiento en la supervivencia al cáncer de laringe: la experiencia de las personas sometidas a Laringectomía Total

O presente estudo parte de reflexões acerca da sobrevivência ao câncer e da experiência estigmatizante vivenciada por pessoas diagnosticadas com câncer de laringe no Hospital Nacional do Câncer/Instituto Nacional do Câncer, submetidas à cirurgia de Laringectomia Total e participantes do Grupo de Laringec-tomizados Totais. O objetivo foi compreender as mediações de saberes e de informações produzidas pelos participantes do grupo na interface com os profissionais de saúde, considerando a sua dupla condição de estigma: o câncer e a deficiência. Parte-se de uma abordagem socioantropológica de caráter qualitativo e ex-ploratório que empregou os métodos de entrevista narrativa com cinco participantes. A análise foi realizada pelo método hermenêutico-dialético. Nos resultados destacam-se a busca pelo reconhecimento individual e social e a valorização da experiência frente aos saberes oficiais e o quanto as mediações extrapolam o espaço institucional. A mediação de saberes faz emergirem elementos significativos para o enfrentamento de uma cultura informacional dominante.

This study is based on reflections on surviving cancer and the stigmatizing experience of people diagnosed with laryngeal cancer at the Hospital Nacional do Câncer/Instituto Nacional do Câncer, who underwent Total Laryngectomy surgery and participated in the Total Laryngectomy Group. The goal was to understand the mediations of knowledge and information produced by the group participants, in the interface with health professionals, considering their double condition of stigma: cancer and disability. It is based on a socio-anthropological approach, of qualitative and exploratory nature that employed the narrative interview method with five participants. The analysis was carried out through the hermeneutic-dialectic method. The results highlight the search for individual and social recognition and the appreciation of experience in relation to official knowledge, and how the mediations go beyond the institutional space. The mediation of knowledge brings out significant elements to confront a dominant informational culture.

El presente estudio se basa en las reflexiones sobre la supervivencia al cáncer y la experiencia estigmatiza-dora de personas diagnosticadas de cáncer de laringe en el Hospital Nacional do Câncer/Instituto Nacional do Câncer, que se sometieron a una Laringectomía Total y participaron en el Grupo de Laringectomía Total. Objetivo: comprender las mediaciones de conocimiento e información producidas por los participantes del grupo, en la interfaz con los profesionales de salud, considerando su doble estigma: cáncer y discapacidad. Se basa en un abordaje socioantropológico, cualitativo y exploratorio, que utilizó métodos de entrevista narrativa con cinco participantes. El análisis ocurrió a través del método hermenéutico-dialéctico. Los resultados destacan la búsqueda de reconocimiento individual y social y la valorización de la experiencia en relación con el conocimiento oficial y la medida en que las mediaciones van más allá del espacio insti-tucional. La mediación del conocimiento pone de manifiesto elementos significativos sobre una cultura informacional dominante.

Effects of different surgical treatments on pain, disability, anxiety and quality of life in lumbar disc herniation.

OBJECTIVE: This study aims to compare the effects of microscopic microdiscectomy and microendoscopic discectomy on pain, disability, fear of falling, kinesiophobia, anxiety, quality of life in patients with lumbar disc herniation (LDH). METHODS: A total of 90 patients who underwent microscopic microdiscectomy (n = 40) and microendoscopic discectomy (n = 50) for LDH were included in this study. The patients' pain, disability, fear of falling, kinesiophobia, anxiety, and quality of life were evaluated before the surgery, in the early postoperative period and three months after. RESULTS: In patients who underwent microendoscopic discectomy, the results of pain, disability, fear of falling, kinesiophobia and anxiety were statistically decreased compared with the microscopic microdiscectomy in the early postoperative period and three months later (p < 0.05). Also, a statistically higher increase was observed in the general health perception of patients who underwent microendoscopic discectomy three months after the operation (p < 0.01). CONCLUSION: Microendoscopic microdiscectomy, remains the most effective and widely applied method with advantages on pain, quality of life, and improved physical functions.

OBJETIVO: Este estudio tiene como objetivo comparar los efectos de la microdiscectomía microscópica y la discectomía microendoscópica sobre el dolor, la discapacidad, el miedo a caer, la kinesiofobia, la ansiedad y la calidad de vida en pacientes con hernia de disco lumbar (LDH). MÉTODOS: Se incluyeron en este estudio un total de 90 pacientes sometidos a microdiscectomía microscópica (n = 40) y discectomía microendoscópica (n = 50) por LDH. Se evaluó el dolor, la discapacidad, el miedo a caer, la kinesiofobia, la ansiedad y la calidad de vida de los pacientes antes de la cirugía, en el postoperatorio temprano y tres meses después. RESULTADOS: En los pacientes sometidos a discectomía microendoscópica, los resultados de dolor, discapacidad, miedo a caer, kinesiofobia y ansiedad disminuyeron estadísticamente en comparación con la microdiscectomía microscópica en el postoperatorio temprano y tres meses después (p < 0.05). Además, se observó un aumento estadísticamente mayor en la percepción de salud general de los pacientes sometidos a discectomía microendoscópica tres meses después de la operación (p < 0.01). CONCLUSIÓN: La microdiscectomía microendoscópica sigue siendo el método más eficaz y ampliamente aplicado con ventajas sobre el dolor, la calidad de vida y la mejora de las funciones físicas.

Covid persistente y discapacidad / Long covid and disability

La long covid o covid persistente es un problema de salud que supondrá un alto coste oculto atribuible a la pandemia años después porque afecta a la capacidad laboral de muchos trabajadores. Dados los millones de casos de covid-19 en todo el mundo y las investigaciones actuales, que muestran que uno de cada 7 pacientes con covid-19 sigue sintomático a las 12 semanas, es probable que el número de pacientes con covid prolongada sea sustancial. La covid prolongada se caracteriza por secuelas heterogéneas que a menudo afectan a múltiples sistemas y órganos con impacto en el funcionamiento y la capacidad del trabajador. Los trabajadores con síntomas de covid persistente pueden regresar a su ocupación, pero esto implica un enfoque individualizado complejo del impacto de los síntomas en el trabajo, ajustes y modificaciones en el lugar del trabajo. Estos pacientes suelen informar de una afectación multisistémica prolongada y una discapacidad significativa. También debe abordarse el coste psicológico para el trabajador. En una encuesta de la Comunidad de Madrid (desarrollada por los sindicatos CC. OO., SATSE, CSIF, AMYTS) de 2022 se observa que el 24,5% de los afectados por covid prolongada estuvieron enfermos durante más de 12 meses y el 30% de los afectados necesita adaptación a su lugar de trabajo. En España se han reportado más de 10millones de personas infectadas por SARS-CoV-2 desde que comenzó la pandemia, por lo que se calcula que podría haber un millón de personas con covid persistente. Solo en 2021 se produjeron en España más de 2,6 millones de bajas laborales por covid-19, cuya duración media fue de 10 días. Cien millones de personas en todo el mundo padecen covid persistente, pero pocos países los cuentan oficialmente, ni ayudan con el empleo a los afectados... (AU)

Long covid is a health problem that will entail a high hidden cost attributable to the pandemic years after it because it affects the work capacity of many workers. Given the millions of covid-19 cases worldwide and current research showing that one in 7covid-19 patients remain symptomatic at 12 weeks, the number of long covid patients is likely to be substantial. Long covid is characterized by heterogeneous sequelae that often affect multiple systems, organs with an impact on the functioning and capacity of the worker. Workers with long covid symptoms can return to their occupation but this involves a complex individualized approach to the impact of symptoms on work, adjustments and modifications to the workplace. Patients with long covid typically report prolonged multisystem involvement and signicant disability. The psychological cost to the worker must also be addressed. A survey by the Community of Madrid (CCOO, SATSE, CSIF, AMYTS) in 2022 reveals that 24.5% of those affected by long covid were sick for more than 12 months; 30% of those affected by persistent covid need and adaption to their workplace. In Spain, more than 10million people infected with SARS-CoV-2 have been reported since the pandemic began, so it is estimated that there could be one million people with persistent covid. In 2021 alone there were more than 2.6 million sick leave due to covid-19 in Spain, the average duration of which was 10 days. One hundred million people around the world suffer from persistent covid, but few countries officially count them, nor do they help those affected with employment. In advanced countries, like the United States, long covid is treated as a disability,and the number of people with disabilities working or looking for work increased by 1.36 million, an increase of 23%, between January 2021 and January 2022... (AU)

Condición de discapacidad y victimización por robo en pobladores de Perú / Disability status and robbery victimization in Peruvian villager

Fundamentos: alrededor del 15% de la población mundial tiene algún grado de discapacidad. La violencia y el crimen afectan primordialmente a la región de américa latina, especialmente a perú. El objetivo de este estudio fue determinar la asociación entre la condición de discapacidad y la victimización por robo en pobladores peruanos durante 2017. Métodos: se realizó un estudio transversal de análisis secundario de datos de la encuesta nacional especializada sobre victimi-zación (enevic) 2017. La variable independiente fue la condición de discapacidad y la variable dependiente fue la victimización por robo; además, se incluyeron variables de confusión. Para demostrar la asociación se realizó una regresión de poisson y se calcularon razones de prevalencia (rp) con sus intervalos de confianza al 95% (ic95%).resultados: se incluyeron los registros de 32.199 peruanos de dieciocho o más años. Las personas con discapacidad tuvieron un 24% menos probabilidad de ser víctimas de robo que las personas sin discapacidad (rp=0,76; ic95%: 0,61-0,95), ajustado por las variables de confusión. Sin embargo, esta asociación solo fue estadísticamente significativa en las mujeres, adultos mayores y en el estrato socioeconómico alto. Conclusiones: en perú, las personas con discapacidad tienen menor probabilidad de ser víctimas de robo que las personas sin discapacidad, aunque solamente si son mujeres, adultos mayores y provienen de un nivel socioeconómico alto. En los demás grupos poblacionales, las probabilidades de sufrir de este hecho de victimización serían semejantes entre las personas con y sin discapacida.(AU)

Background: about 15% of the world’s population has some degree of disability. Violence and crime primarily affect the latin american region, especially peru. This study aimed to determine the association between disability status and robbery victimization in peruvian villagers in 2017. Methods: a cross-sectional study of secondary data analysis from the national specialized victimization survey (enevic) 2017 was conducted. The independent variable was disability status, and the dependent variable was robbery victimization; in addition, confounding variables were included. Poisson regression was performed to demonstrate the association, and prevalence ratios (pr) with their 95% confidence intervals (95%ci) were calculated.results: records of 32,199 peruvians aged 18 years or older were included. People with disabilities were 24% less likely to be rob-bery victims than people without disabilities (pr=0.76; 95%ci: 0.61-0.95), adjusted for confounding variables. However, this association was only statistically significant in women, older adults, and the high socioeconomic stratum. Conclusions: in peru, people with disabilities are less likely to be robbery victims than people without disabilities. However, only if they are women, older adults, and come from a high socioeconomic level. In the other population groups, the probabilities of suffering this victimization would be similar between people with and without disabilities.(AU)

[Current status of requirements in the design of healthcare facilities to ensure accessibility for patients with disabilities]. / Estado actual de los requerimientos en el diseño de centros sanitarios para asegurar accesibilidad a pacientes con discapacidad.

BACKGROUND AND OBJECTIVE: People with disabilities are one of the groups that usually frequent healthcare centers, so it is essential to attend to their specific needs, especially from the point of view of universal accessibility, safety and healthcare quality. The aim of the study is to summarize the available evidence on the needs of groups of patients with some type of disability in access, navigation and stay during the reception of healthcare in various health centers and to identify successful solutions. MATERIALS AND METHODS: A scoping review had been designed, based on a literature review without time limit in three databases (PubMed, WOS, and Embase). RESULTS: Of the 2562 articles identified, 11 were included. Recommendations for improvement in the design of healthcare services focused on the following aspects: improving access to primary care centers; navigation, signage, and orientation in the hospital environment; elevator design; hospital room bathroom design; meeting the needs of wheelchair users; importance of the participation of the patient with a disability; involvement of stakeholders in the design process; and the need for appropriate policies to ensure accessibility to buildings. CONCLUSIONS: The promotion of artistic programs in healthcare settings and the participation of people with disabilities in the design process of healthcare settings could provide beneficial solutions. More studies are needed, given the scarcity of evidence found, to ensure that care for this group is based on criteria of patient safety, universal accessibility, healthcare quality and humanization.

Avaliação de incapacidade em pessoas com doença falciforme / Disability assessment in people with sickle cell / Evaluación de la discapacidad en personas con enfermedad de células falciformes

A expectativa de vida das pessoas com doença falciforme (DF) é baixa, e o agravamento da condição de saúde é frequente, gerando incapacidades. Todavia, pouco é conhecido sobre tais incapacidades com base na Classificação Internacional de Funcionalidade, Incapacidade e Saúde (CIF). Assim, o objetivo do estudo foi descrever as incapacidades de adultos com DF. Realizou-se um estudo transversal descritivo, com 60 adultos com DF, de ambos os sexos. Informações sociodemográficas, fatores clínicos relacionados ao tipo de DF foram autorreferidos pelos participantes. As incapacidades foram avaliadas por meio da Escala de Avaliação de Incapacidade da Organização Mundial da Saúde (WHODAS 2.0) nos seguintes domínios: cognição, mobilidade, autocuidado, relações interpessoais (convivência com as pessoas), atividades de vida e participação na sociedade. Em cada domínio, foi definida incapacidade quando o sujeito relatou dificuldade leve, moderada, grave ou extrema de desempenhar a tarefa. Os dados foram analisados por estatística descritiva (frequências relativas). Os resultados mostraram valores elevados em todos os domínios avaliados, com destaque para dificuldades de concentração (90%) e desempenho nas tarefas domésticas (93,3%) e impacto da situação de saúde nas finanças do sujeito/família (96,7%). Os dados deste estudo mostraram que adultos com DF apresentam elevados índices de incapacidade, especialmente no domínio cognitivo, nas atividades de vida e na participação social.

Life expectancy of people living with sickle cell disease (SCD) is in general low and the worsening of their health condition is frequent, resulting in disabilities. However, knowledge about those disabilities based on the International Classification of Functioning, Disability and Health (ICF) is scarce. Thus, this study aimed to describe the disabilities of adults with SCD. A descriptive cross-sectional study was carried out with 60 adults with SCD of both sexes. Sociodemographic and clinical factors related to the type of SCD were self-reported by the participants. Disabilities were assessed by the World Health Organization Disability Assessment Schedule (WHODAS 2.0), in the following domains: cognition, mobility, selfcare, getting along with people, life activities, and participation in society. In each domain, disability was defined when the participant self-reported light, moderate, severe, extreme difficulty, or inability to perform the task. Data analysis included descriptive statistics (relative frequencies). The results showed high values in all domains evaluated, with emphasis on difficulties on concentrating (90%) and performing household chores (93.3%) and on the impact of health condition on subject/family's financial situation (96.7%). The data from this study shows that adults with SCD present high disability levels, especially on the cognitive domain, on life activities, and on social participation.

Las personas con enfermedad de células falciformes (ECF) tienen una baja esperanza de vida, y el empeoramiento de su estado de salud es frecuente, generando discapacidades. Sin embargo, estas discapacidades son poco conocidas según la Clasificación Internacional del Funcionamiento, de la Discapacidad y de la Salud (CIF). El objetivo de este estudio fue describir las discapacidades de adultos con ECF . Se realizó un estudio transversal, descriptivo, con 60 adultos con ECF, de ambos sexos. Los factores sociodemográficos y clínicos relacionados con el tipo de ECF fueron autoinformados. Las discapacidades se evaluaron mediante la Escala de Evaluación de la Discapacidad de la Organización Mundial de la Salud (WHODAS 2.0), en los dominios de cognición, movilidad, autocuidado, convivencia con personas, actividades de la vida y participación en la sociedad. La discapacidad se definió mediante un reporte de dificultad o incapacidad leve, moderada, grave, extrema del individuo para realizar una tarea. Los datos fueron analizados por estadística descriptiva (frecuencias relativas). Los resultados mostraron altos valores de discapacidad en todos los dominios evaluados, con énfasis en las dificultades de concentración (90%), el desempeño en las tareas domésticas (93,3%) y el impacto de la situación de salud en las finanzas del sujeto/familia (96,7%). Los datos de este estudio mostraron que los adultos con ECF tienen altas tasas de discapacidad, especialmente en los dominios cognitivo, actividades de la vida y participación social.

[Long covid and disability]. / Covid persistente y discapacidad.

Long covid is a health problem that will entail a high hidden cost attributable to the pandemic years after it because it affects the work capacity of many workers. Given the millions of covid-19 cases worldwide and current research showing that one in 7covid-19 patients remain symptomatic at 12 weeks, the number of long covid patients is likely to be substantial. Long covid is characterized by heterogeneous sequelae that often affect multiple systems, organs with an impact on the functioning and capacity of the worker. Workers with long covid symptoms can return to their occupation but this involves a complex individualized approach to the impact of symptoms on work, adjustments and modifications to the workplace. Patients with long covid typically report prolonged multisystem involvement and signicant disability. The psychological cost to the worker must also be addressed. A survey by the Community of Madrid (CCOO, SATSE, CSIF, AMYTS) in 2022 reveals that 24.5% of those affected by long covid were sick for more than 12 months; 30% of those affected by persistent covid need and adaption to their workplace. In Spain, more than 10million people infected with SARS-CoV-2 have been reported since the pandemic began, so it is estimated that there could be one million people with persistent covid. In 2021 alone there were more than 2.6 million sick leave due to covid-19 in Spain, the average duration of which was 10 days. One hundred million people around the world suffer from persistent covid, but few countries officially count them, nor do they help those affected with employment. In advanced countries, like the United States, long covid is treated as a disability,and the number of people with disabilities working or looking for work increased by 1.36 million, an increase of 23%, between January 2021 and January 2022. In the United Kingdom, some 200,000 people are not working or are not looking for work due to long-term health problems attributable to long covid, since the pandemic began.