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This paper investigates the challenges faced by health professionals working with children with disabilities, with the aim of identifying areas for improvement. Employing a focus group method, the study involved knowledge levelling, discussions, problematization, cause formulation, and validation. A diverse team of ten professionals participated, including physiotherapists, speech therapists, occupational therapists, psychologists, nursing technicians, and social workers. Findings reveal organisational inflexibility in appointment scheduling, lack of deadlines affecting case monitoring, and the mental strain of immediate clinical responses. Effective communication and multidisciplinary care emerge as beneficial. Proposed improvements include flexible space utilisation, enhanced room design, structured collaboration training, role clarification, parent partnerships, flexible scheduling, and continuous professional development. This study unveils unique challenges and rewards in the healthcare environment, offering insights into causative factors and practical strategies for enhancing the work of health professionals working with children with disabilities.

Health professionals working with children with disabilities encounter various challenges in their daily practice. This research identifies key areas for improvement, including enhancing collaboration among team members, optimising physical spaces, and providing ongoing training and support. By addressing these challenges and implementing the proposed improvement strategies, practitioners can better meet the complex needs of children with disabilities and improve overall patient care outcomes.

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Resumo Objetivou-se identificar fatores associados à atenção à saúde infantil na atenção primária à saúde (APS), na perspectiva das ações preconizadas pela Rede de Cuidados à Pessoa Deficiência (RCPCD), quanto à identificação precoce de deficiências e acompanhamento do desenvolvimento infantil. Trata-se de estudo transversal, multicêntrico, realizado em oito estados brasileiros. A coleta de dados envolveu a aplicação de questionário estruturado com profissionais de saúde de nível superior atuantes na APS, com amostra aleatória estratificada por estado e município. Foram realizadas regressões de Poisson com variância robusta para duas variáveis resposta. Entre os 1.488 trabalhadores que compuseram a amostra final, 63,6% realizam ações de identificação precoce de deficiências e 49% efetuam acompanhamento do desenvolvimento infantil. As equipes de Saúde da Família (eSF) identificam e acompanham mais do que as equipes do modelo tradicional, e os Núcleos Ampliados de Saúde da Família e Atenção Básica realizam mais ações de acompanhamento do que essas equipes. Conclui-se que os fatores mais associados com a identificação e o acompanhamento de crianças com deficiências na APS foram aqueles relativos à formação profissional, à eSF e ao conhecimento de normativas relativas à RCPCD.

Abstract The aim of this study was to identify factors associated with early identification of disabilities and developmental follow-up of children in primary health care (PHC) services under the Care Network for People with Disabilities (RCPCD). We conducted a cross-sectional study using data from a multicenter study undertaken in eight states. The data were collected using a structured questionnaire answered by PHC professionals with degree-level qualifications selected using random sampling and stratified by state and municipality. Poisson regression with robust variance was performed for the two outcomes. Of the 1,488 workers in the final sample, 63.6% performed early identification of disabilities and 49% provided developmental follow-up. Family health teams performed early identification of disabilities and follow-up more than traditional model teams, and expanded family health teams provided developmental follow-up more than both these teams. The factors that showed the strongest association with identification and developmental follow-up were profession, working in a family health team and knowledge of the RCPCD.

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BACKGROUND: Motor and intellectual disabilities (MIDs) represent a great challenge for maintaining general health due to physical and cognitive limitations, particularly in the maintenance and preservation of oral health. Silver nanoparticles (AgNPs) have emerged as a promising therapeutic tool for bacterial control, including oral biofilms; however, knowledge of the bactericidal effectiveness of oral biofilms from patients with MIDs is insufficient. This study aims to determine the antimicrobial effect of AgNPs on different oral biofilms taken from patients with and without MIDs. METHODS: Two sizes of AgNPs were prepared and characterized by dynamic light scattering (DLS) and transmission electron microscopy (TEM). Through consecutive sampling, biofilm samples were collected from 17 subjects with MIDs and 20 subjects without disorders. The antimicrobial effect was determined by obtaining the minimum inhibitory concentration (MIC) of AgNPs, and the identification and distribution of oral bacterial species were determined by polymerase chain reaction (PCR). Finally, correlations between sociodemographic characteristics and the antimicrobial levels of AgNPs were also explored. The values of the MIC results were analyzed with IBM-SPSS software (version25) using non-parametric tests for independent groups and correlations, with statistical significance being considered as p < 0.05. RESULTS: Both sizes of AgNPs exhibited tight particle size distributions (smaller: 10.2 ± 0.7 nm; larger: 29.3 ± 2.3 nm) with zeta potential values (-35.0 ± 3.3 and -52.6 ± 8.5 mV, respectively) confirming the stability that resulted in little to no agglomeration of nanoparticles. Although both sizes of AgNPs had good antimicrobial activity in all oral biofilms, the smallest particles had the best antimicrobial effects on the oral biofilm samples from patients with and without MIDs, even better than chlorhexidine (CHX) (p < 0.05). Likewise, the patients with disabilities showed higher levels of antimicrobial sensitivity to AgNPs compared with CHX (p < 0.05). Although the microorganisms included in the biofilms of females had a statistically higher growth level, the AgNP antimicrobial effect was statistically similar in both genders (p > 0.05). The most frequent bacteria for all oral biofilms were S. mutans (100%), P. intermedia (91.6%), T. forsythia (75.0%), T. denticola (75.0%), P. gingivalis (66.6%), F. nucleatum (66.6%), S. sobrinus (50.0%), and A. actinomycetemcomitans (8.3%). CONCLUSIONS: AgNPs exhibited considerable antimicrobial potential to be used as a complementary and alternative tool in maintaining and preserving oral health in patients with MIDs.

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Las injusticias epistémicas son aquellas formas de trato injusto que se relacionan con la producción, trasmisión o utilización del conocimiento por parte de los sujetos. El encuadre ético-epistémico y socio-epistémico proporcionado por estas injusticias se vincula con temas que atraviesan las principales tradiciones filosóficas como el pragmatismo, la fenomenología y la teoría crítica. Estas injusticias se interrelacionan, además, con movimientos sociales e intelectuales como el feminismo, la teoría crítica de la raza, los estudios críticos de la discapacidad y las epistemologías decolonizadoras. Sin embargo, existe un cuestionamiento a que las personas con discapacidad no han sido suficientemente abordadas. El presente artículo se posiciona en los debates actuales sobre las injusticias epistémicas y la discapacidad, y tiene como propósito aportar el concepto de "injusticias epistémicas normalizadas". Partiendo de la constatación de las formas en que se reconocen opresivamente los sujetos con discapacidad, como alejados de la "norma", establece que existen injusticias epistémicas asociadas con esta identificación. Propone que las injusticias epistémicas normalizadas ocurren en la intersección de dos ámbitos: un sistema hermenéutico capacitista y una agencia epistémica restringida en la que se producen al menos tres tipos de configuraciones: no agencia, agencias epistémicas disminuidas y agencias epistémicas en resistencia. Pensar las injusticias epistémicas considerando el peso de la "normalidad" en la constitución como sujetos de las personas con discapacidad permite reconocer una situación crítica de exclusión epistémica para algunas personas, mientras que otras resisten y luchan por ser comprendidas en los recursos hermenéuticos colectivos.

Epistemic injustices refer to those forms of unfair treatment that are related to the production, transmission, or use of knowledge by the subjects. The ethical-epistemic and socio-epistemic framework provided by these injustices is linked to themes that cross the main philosophical traditions such as pragmatism, phenomenology, and critical theory. These injustices are further intertwined with social and intellectual movements such as feminism, critical race theory, critical disability studies, and decolonizing epistemologies. However, there is a question that people with disabilities have not been sufficiently addressed. This article is positioned in the current debates on epistemic injustices and disability, and its purpose is to contribute the concept of "normalized epistemic injustices". Starting from the verification of the ways in which subjects with disabilities are oppressively recognized, as far from the "norm", it establishes that there are epistemic injustices associated with this identification. It proposes that normalized epistemic injustices occur at the intersection of two realms: a capacitist hermeneutic system and a constrained epistemic agency where at least three types of configurations are produced: non-agency; diminished epistemic agencies and epistemic agencies in resistance. Thinking about epistemic injustices considering the weight of "normality" in the constitution as subjects of people with disabilities allows us to recognize a critical situation of epistemic exclusion for some people, while others resist and fight to be understood in collective hermeneutical resources.

As injustiças epistêmicas referem-se àquelas formas de tratamento injusto que estão relacionadas à produção, transmissão ou uso do conhecimento pelos sujeitos. O enquadramento ético-epistêmico e socioepistêmico proporcionado por essas injustiças está vinculado a temas que atravessam as principais tradições filosóficas como o pragmatismo, a fenomenologia e a teoria crítica. Essas injustiças estão ainda mais entrelaçadas com movimentos sociais e intelectuais como o feminismo, a teoria crítica da raça, os estudos críticos da deficiência e as epistemologias descolonizadoras. No entanto, há uma questão de que as pessoas com deficiência não foram suficientemente abordadas. Este artigo se posiciona nos debates atuais sobre injustiças epistêmicas e deficiência, e seu objetivo é contribuir com o conceito de "injustiças epistêmicas normalizadas". A partir da verificação das formas como os sujeitos com deficiência são opressivamente reconhecidos, como distantes da "norma", constata-se que existem injustiças epistêmicas associadas a essa identificação. Propõe que injustiças epistêmicas normalizadas ocorrem na interseção de dois domínios: um sistema hermenêutico capacitista e uma agência epistêmica restrita onde pelo menos três tipos de configurações são produzidas: não-agência; agências epistêmicas diminuídas e agências epistêmicas em resistência. Pensar as injustiças epistêmicas considerando o peso da "normalidade" na constituição como sujeitos das pessoas com deficiência permite reconhecer uma situação crítica de exclusão epistêmica para algumas pessoas, enquanto outras resistem e lutam para serem compreendidas em recursos hermenêuticos coletivos.

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Resumo O objetivo do trabalho consiste em avaliar o desempenho de serviços de atenção primária à saúde (APS) do estado de São Paulo para prevenção, detecção e assistência à deficiência. Realizou-se uma pesquisa avaliativa em 2.739 serviços de saúde em 514 municípios com 128 indicadores da qualidade organizacional do instrumento QualiAB referentes à dimensão avaliativa "Atenção à deficiência em serviços de atenção primária à saúde". Foram utilizadas medidas de desempenho e associações entre os escores de cada domínio e variáveis independentes sobre planejamento, avaliação em saúde e rede de apoio, por meio de regressão linear múltipla. O percentual de desempenho para a dimensão foi de 61,6%, para o domínio estrutura (insumos e recursos humanos), 73,6%, para qualificação da atenção ao pré-natal, 68,7%, qualificação da atenção à saúde da criança, 56,1%, prevenção de incapacidades relacionadas a condições crônicas, 55,8%, e atenção à pessoa com deficiência e ao cuidador, 53,9%. Houve associação significativa com variáveis relacionadas ao tipo de serviço e de participação em avaliações de serviços. Os serviços de APS ainda realizam ações incipientes para prevenção, vigilância e diagnóstico das deficiências, assim como para a atenção integral a pessoas com deficiência.

Abstract The objective of this study was to assess the performance of primary health care (PHC) services for disability prevention, detection and assistance in the state of São Paulo. The study included 2739 health services, from 514 municipalities. 128 organizational quality indicators of the QualiAB instrument referring to the evaluative dimension "Attention to disability in primary health care services". The association of health care performance score of each domain with independent variables, health assessment, and support network were tested using of multiple linear regression. The performance percentage was 61.6% for all domains, 73.6% for structure (inputs and human resources), 68.7% for qualification of prenatal care, 56.1% for qualification of child health care, 55.8% for prevention of disabilities related to chronic conditions, and 53.9% for attention to people with disabilities and caregivers. There was a significant association with variables related to the type of service and participation in service evaluations. PHC services still perform incipient actions for the prevention, surveillance and diagnosis of disabilities as well as for comprehensive care for people with disabilities.

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Objetivo. Evaluar la eficacia del programa de salud bucal para los cuidadores de las personas con discapacidad. Métodos: Estudio cuasi experimental de intervención directa, longitudinal, con control antes y después, con un muestreo no probabilístico. Se diseñó, aplicó y evaluó un programa educativo de salud bucal a los cuidadores de personas con discapacidad, mediante una encuesta diseñada al efecto, antes y después de su implementación, en 111 cuidadores, así como la evaluación del Índice de Higiene Bucal de sus familiares con discapacidad, en el periodo de octubre a diciembre de 2020. La información fue procesada utilizando las herramientas de Excel y el programa SPSS versión 25. Los datos numéricos fueron resumidos en tablas descriptivas y los datos categóricos en tablas de frecuencia. Resultados: Antes de la intervención 9,9 % de las personas con discapacidad asistían cada seis meses al dentista, lo cual se incrementó a 76,5 %. Antes del programa 102 personas solo usaban cepillos y pasta dentales para la limpieza bucal, después 109 continuaron usando los mismos productos, sin embargo, se incrementó en un 6 % el uso del hilo dental. El Índice de Higiene bucal se mantuvo como regular, aunque disminuyó de 2.30 a 1.68. Conclusiones: La aplicación del programa cambió positivamente la situación de la salud bucal de los discapacitados ya que los cuidadores demostraron la adquisición de los nuevos conocimientos para una adecuada higiene de la cavidad bucal, la constancia en la aplicación del proceso y la necesidad de asistir a la atención odontológica por hábito y no por necesidad puntual.

Objective: Determine the level of knowledge of caregivers of people with disabilities about oral health before and after applying a program of educational workshops on the subject. Methods: It was a quasi-experimental study of direct intervention, longitudinal, with control before and after, with non-probabilistic sampling. An educational oral health program for caregivers of people with disabilities was developed, applied, and evaluated through a survey before and after its implementation, in 111 caregivers, as well as the evaluation of the Oral Hygiene Index of their relatives with disabilities, in the period from October to December 2020. Results: Before the intervention, 9.9% of people with disabilities attended the dentist every six months, which increased to 76.5%. Before the program, 102 people only used toothbrushes and toothpaste for oral cleaning, after 109 continued using the same products, however, the use of dental floss increased by 7 people. The Oral Hygiene Index remained regular, although it decreased from 2.30 to 1.68. Conclusion: The application of the oral health program had a favorable impact on caregivers, improving the knowledge regarding oral hygiene of their relatives with disabilities, improving the Oral Hygiene Index.

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AIM: The congenital Zika Syndrome (CZS) often leads to severe motor impairment in affected children, making independent walking unlikely. Early introduction of motorized mobility through ride-on cars has been recommended for young children with severe motor impairment, enabling independent movement in various environments. This study aims to explore mothers' perceptions of their children's experiences while using ride-on cars at home and in the community, focusing on children with CZS. METHODS: This is a qualitative and descriptive study design using the Photovoice method. Four mothers of children with CZS, participating in the 'Go Zika Go' intervention project, were included. The research involved the following six steps: 1) Presentation of guide questions and Photovoice training; 2) Participants capturing photos; 3) Individual interviews to contextualize the photos; 4) Transcription and data analysis using thematic analysis principles; 5) Validation of analyses by mothers; and 6) Exhibition of photos to the community. RESULTS: The mothers and researchers selected the 21 most relevant photographs, which revealed five main themes related to the use of motorized ride-on cars: 1) Experiences of participation; 2) Independence in mobility; 3) Characteristics of mobility devices; 4) Family support; and 5) Accessibility of the environment. CONCLUSION: The narratives provided by participants, along with photographs depicting the daily lives of children with CZS, shed light on aspects of functionality, autonomy, and participation. The use of these devices contributes to overall equity, breaking down social and cultural barriers and enabling children with disabilities to be seen as equals by their peers.

To understand the barriers and facilitators experienced by children with Congenital Zika Syndrome (CZS) when using motorized ride-on cars at home and in the community can contribute to the planning of interventions aimed at implementing motorized mobility as an intervention modality for children with severe motor and cognitive impairments in low- and middle-income countries.The Photovoice method can be useful to capture the experiences of children with severe disabilities such as Congenital Zika Syndrome while using adapted motorized ride-on cars.Involving mothers of children with severe disabilities as co-researchers can contribute to the advancement of more relevant research for the public/patient, considering that they are specialists by knowledge.The use of motorized mobility for children with CZS can minimize social disadvantages, favor equity in its entirety, providing for the breakdown of cultural and attitudinal barriers.

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The aim of this study is to compare the dental profiles of Brazilian patients with rare genetic skeletal disorders and normotypical patients. A cross-sectional study was carried out with 210 individuals aged between 2 and 54 years old [105 with rare diseases (Mucopolysaccharidosis/MPS n = 27 and Osteogenesis Imperfecta/OI n = 78) and 105 without rare diseases] and their parents/caregivers. The parents/caregivers answered a questionnaire about individual aspects of their child and the dental profile was identified from questions related to dental history and the presence/absence of dental problems. The patients' oral cavity was also examined by three examiners for dental caries, malocclusion, gingivitis, and dental anomalies. The average age of individuals with a rare disease was 14.1 years (±12.2) and the median was 9.5 years. Participants who had already used the public health system (SUS) dental care services had a 2.24 times higher chance of belonging to the group with a rare disease (OR = 2.24; 95% CI: 1.07-4.89). Patients with rare diseases are 14.86 times more likely to have difficulty receiving dental treatment (OR = 14.86; 95% CI: 5.96-27.03) and 10.38 times more likely to have one or more dental problems (OR = 10.38; 95% CI: 1.95-35.17). Individuals with rare disorders have a greater history of difficulty in accessing dental treatment, using the SUS, and were diagnosed with more dental problems compared to normotypical individuals.

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Abstract With the upsurge of community uptake in popula tion-based early screening for autism, the main obstacle to increasing access to early treatment and intervention services is the extremely limited access to high quality diagnosis, specifically the shortage of expert clinicians. Diagnostic evaluation models deployed by academic cen ters of excellence, which typically require the investment of 6-10 hours by specialized multidisciplinary teams, is not a viable solution to the vast needs of communities, resulting in parents' "diagnostic odysseys" and delays, often of several years, for treatment, interventions and supports. Biomarker-based objective procedures for early diagnosis and assessment of autism are now available, clinically validated, and cleared for broad implementa tion by the US Food and Drug Administration (FDA). They are intended to increase access while maintaining high quality. Such solutions, however, will require change in entrenched models of diagnostic care, and aggressive prioritization of the needs of the community at large. If these innovations are successful, the number of children diagnosed in the first three years of life will double or triple. This will, in turn, require much greater inves tments in resources for treatment, including massive workforce training of providers capable of delivering community-viable caregiver-mediated interventions, and of early educators capable of serving autistic children in therapeutic inclusive preschool settings.

Resumen Con el aumento de la aceptación comunitaria de la detección temprana del autismo basada en la pobla ción, el principal obstáculo para aumentar el acceso al tratamiento temprano y a los servicios de intervención es el acceso extremadamente limitado a un diagnóstico de alta calidad, específicamente la escasez de médicos expertos. Los modelos de evaluación diagnóstica imple mentados por centros académicos de excelencia, que normalmente requieren la inversión de 6 a 10 horas por parte de equipos multidisciplinarios especializados, no son una solución viable para las vastas necesidades de las comunidades, lo que resulta en "odiseas diagnósti cas" y retrasos, a menudo de gran importancia, para los padres varios años, para tratamiento, intervenciones y apoyos. Los procedimientos objetivos basados en bio marcadores para el diagnóstico temprano y la evaluación del autismo ya están disponibles, clínicamente validados y aprobados para su amplia implementación por la Ad ministración de Alimentos y Medicamentos de EE. UU. (FDA). Su objetivo es aumentar el acceso manteniendo una alta calidad. Sin embargo, tales soluciones requeri rán cambios en los modelos arraigados de atención de diagnóstico y una priorización agresiva de las necesida des de la comunidad en general. Si estas innovaciones tienen éxito, el número de niños diagnosticados en los primeros tres años de vida se duplicará o triplicará. 51 Esto, a su vez, requerirá inversiones mucho mayores en recursos para el tratamiento, incluida la capacitación masiva de la fuerza laboral de proveedores capaces de brindar intervenciones comunitarias viables mediadas por cuidadores, y de educadores tempranos capaces de atender a niños autistas en entornos preescolares terapéuticos inclusivos.

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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.

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LAY ABSTRACT: Caregivers of children with developmental disabilities, including autism, often struggle to access services, information and resources in Argentina. Little is known about how caregivers can be empowered to support their children as they wish to in the Argentinian setting. We spoke with 32 people online to understand existing and potential practices of supporting caregivers. The people we spoke with included caregivers, health service providers, non-governmental organisations' representatives providing services or technical support, special education teachers and policy representatives. Participants said that poverty, and inequalities in accessing support, impact how caregivers can support their children. They mentioned examples that help caregivers feel empowered, such as peer support groups and caregiver training. Many caregivers spoke about how they became advocates for their children and how they developed initiatives such as advocacy campaigns and well-being support groups. Caregivers in Argentina may be empowered in various ways, and the following strategies can improve empowerment: strengthening collaboration between professionals and caregivers; focusing on caregiver mental health; and addressing the profound impact of poverty on the quality of life of families.

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Para a Terapia Ocupacional, o esporte é uma atividade humana relacionada às ocupações de Lazer, Trabalho, Gerenciamento de Saúde e Participação Social, além de um possível recurso terapêutico. O objetivo desta pesquisa é identificar, na perspectiva de mulheres atletas com deficiência visual e de seus treinadores, quais são os impactos do esporte na participação social e no desempenho ocupacional, além das dificuldades encontradas. Trata-se de um estudo exploratório, transversal, descritivo, qualitativo, com coleta de dados feita por entrevistas semiestruturadas e análise pela Análise de Conteúdo Temática. Pode-se concluir que o esporte tem um impacto positivo principalmente na autoestima e participação social dessas atletas, porém, ainda existem muitas barreiras socioculturais, físicas e estruturais para que essa prática ocorra de maneira satisfatória e tenha um impacto prático no desempenho ocupacional.

Sports are seen by Occupational Therapists as a human activity related to the occupations Leisure, Work, Health Management and Social Participation and also as a possible therapeutic resource. This study aims to identify the perspective of visually impaired female athletes and their coaches, about the impacts of sports on social participation and occupational performance, in addition to identifying difficulties. The study is exploratory, cross-sectional, descriptive, qualitative, with semi-structured interviews for data collection and analysis based on thematic analysis. As results, the practice of physical activities has a meaningful impact on the self-esteem and social participation of the athletes, however, there still are sociocultural, physical and structural barriers for a satisfactory practice and for a positive real impact on the occupational performance of the population studied.

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OBJECTIVE: This study aims to investigate the relationship between the Developmental Surveillance Instrument -Instrumento de Vigilância do Desenvolvimento (IVD), found in the Child's Booklet Caderneta da Crianca (CC), and standardized scales: Alberta Infant Motor Scale (AIMS) and Denver Developmental Screening Test (Denver-II). METHODS: Employing an exploratory observational approach, we adopted a prospective longitudinal design with a quantitative approach. The convenience sample included 83 Brazilian children born between May and August 2019 in a public hospital. Of the total, 45 (54.22 %) were male, and 38 (45.78 %) were female. Developmental screening utilized the IVD, AIMS and Denver-II tests. Comparative analysis between groups employed Mann-Whitney or Kruskal-Wallis tests for numerical variables and chi-square/Fisher tests for categorical variables, with a significance level of 5 % (p < 0.05). RESULTS: A significant correlation was observed between the IVD and the AIMS and Denver-II tests (p < 0.001) at months 1, 4, and 8. CONCLUSION: The presence of a robust correlation between the IVD and the AIMS and Denver-II tests at months 1, 4, and 8 implies that the IVD in the Child's Booklet serves as a reliable and effective indicator for screening infant development during this critical period. Detecting issues early through these methods is crucial to ensure the well-being of children, allowing for appropriate interventions as needed.

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With the upsurge of community uptake in population-based early screening for autism, the main obstacle to increasing access to early treatment and intervention services is the extremely limited access to high quality diagnosis, specifically the shortage of expert clinicians. Diagnostic evaluation models deployed by academic centers of excellence, which typically require the investment of 6-10 hours by specialized multidisciplinary teams, is not a viable solution to the vast needs of communities, resulting in parents' "diagnostic odysseys" and delays, often of several years, for treatment, interventions and supports. Biomarker-based objective procedures for early diagnosis and assessment of autism are now available, clinically validated, and cleared for broad implementation by the US Food and Drug Administration (FDA). They are intended to increase access while maintaining high quality. Such solutions, however, will require change in entrenched models of diagnostic care, and aggressive prioritization of the needs of the community at large. If these innovations are successful, the number of children diagnosed in the first three years of life will double or triple. This will, in turn, require much greater investments in resources for treatment, including massive workforce training of providers capable of delivering community-viable caregiver-mediated interventions, and of early educators capable of serving autistic children in therapeutic inclusive preschool settings.

Con el aumento de la aceptación comunitaria de la detección temprana del autismo basada en la población, el principal obstáculo para aumentar el acceso al tratamiento temprano y a los servicios de intervención es el acceso extremadamente limitado a un diagnóstico de alta calidad, específicamente la escasez de médicos expertos. Los modelos de evaluación diagnóstica implementados por centros académicos de excelencia, que normalmente requieren la inversión de 6 a 10 horas por parte de equipos multidisciplinarios especializados, no son una solución viable para las vastas necesidades de las comunidades, lo que resulta en "odiseas diagnósticas" y retrasos, a menudo de gran importancia, para los padres varios años, para tratamiento, intervenciones y apoyos. Los procedimientos objetivos basados en biomarcadores para el diagnóstico temprano y la evaluación del autismo ya están disponibles, clínicamente validados y aprobados para su amplia implementación por la Administración de Alimentos y Medicamentos de EE. UU. (FDA). Su objetivo es aumentar el acceso manteniendo una alta calidad. Sin embargo, tales soluciones requerirán cambios en los modelos arraigados de atención de diagnóstico y una priorización agresiva de las necesidades de la comunidad en general. Si estas innovaciones tienen éxito, el número de niños diagnosticados en los primeros tres años de vida se duplicará o triplicará. Esto, a su vez, requerirá inversiones mucho mayores en recursos para el tratamiento, incluida la capacitación masiva de la fuerza laboral de proveedores capaces de brindar intervenciones comunitarias viables mediadas por cuidadores, y de educadores tempranos capaces de atender a niños autistas en entornos preescolares terapéuticos inclusivos.

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PURPOSE: To explore the feasibility of an intervention using modified ride-on cars in terms of acceptability and potential changes in goal attainment, mobility, social function, and participation of children with Congenital Zika Syndrome (CZS). MATERIALS AND METHODS: A pre- and post-intervention feasibility study was conducted with children with CZS, levels IV and V of the Gross Motor Function Classification System (GMFCS). The intervention consisted of 12 weeks of training (3 times a week for 40 min per session) and 4 weeks of follow-up. The primary outcomes included adherence, satisfaction, and learning in mobility. Secondary outcomes encompassed goal attainment, mobility, social/cognitive function, and participation. Descriptive statistics were performed. To explore potential individual changes with the intervention, Wilcoxon test was used to analyze Pediatric Evaluation of Disability Inventory - Computer Adaptive Test (PEDI-CAT) data and Young Children's Participation and Environment Measure (YC-PEM)/Participation and Environment Measure for Children and Youth (PEM-CY), along with standard error measurements of the PEDI-CAT domains. RESULTS: Four children participated (median age 4.75 years; two females: three at level V on the GMFCS). Adherence was 75% of the total intervention time, and family members reported being satisfied or very satisfied. Children showed gains in learning the use of the modified ride-on cars and an increase in goal attainment after the intervention. Individual changes were observed in the PEDI-CAT domains (mobility and social/cognitive), but there were no significant changes in participation outcomes. CONCLUSIONS: Children with CZS at GMFCS levels IV and V can learn to use motorized ride-on cars, attainment goals, and experience satisfaction.

Motorized mobility for children with Congenital Zika Syndrome and severe physical and cognitive disabilities is feasible and can encourage future interventions focused on activities and participation.This research contributes to the understanding of the potential changes that motorized mobility can have on goal attainment, satisfaction, and learning.Motorized mobility can be a means to enable children with Congenital Zika Syndrome to have opportunities for participation and guarantee their rights.

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Spinal Cord Injuries (SCI) may cause non-motor symptoms, such as chronic pain, which impair quality of life (QoL)Objective: To investigate the relationship between adapted competitive sports, pain, and QoL in people with SCI in a limited resources setting population.Methods: This prospective cross-sectional observational study involved 16 athletes and 24 non-athletes with SCI and collected data on demographic and clinical variables including scores for pain and pain interference in daily life (Brief Pain Inventory, BPI), neuropathic pain severity (Neuropathic Pain Symptoms Inventory, NPSI) and Quality of life (Word Health Organization Quality of Life Assessment, WHOQOL-BREF). Non-parametric testing was used to compare the groups, and due to athletes being younger, multiple linear regression analyses were used to adjust for the effect of sports practice on the outcome variables when adjusting for age.Results: Athletes were younger (median age 36y) than non-athletes (median age 41.5y; Mann-Whitney U test P = 0.011), and QoL was superior in athletes for the Physical, Psychological, Social Relationships, Self-Evaluation domains, and Total Score when adjusted for age (P < 0.01). Despite having no significant differences in pain intensity scores (NPSI, P = 0.742 and BPI, P = 0.261) athletes had less pain interference on "Relationship with Others", "Enjoyment of Life", and Total score (P < 0.05). Participation in competitive adapted sports (P = 0.004) and Total Pain Interference (P = 0.043) were significantly associated with QoL scores in the multiple linear regression analyses.Conclusion: Athletes with SCI have better QoL and less pain interference in some aspects of life when compared to non-athletes.

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Introducción: Existen diferentes causas que impiden el movimiento muscular en una persona, para las cuales en algunos casos no existe un tratamiento médico que detenga el progreso de la enfermedad; sin embargo, existen ayudas tecnológicas que permiten a las personas con discapacidad mejorar sus habilidades para ayudarlos a vivir de forma autónoma y participar en sociedad. La tecnología asistida ha desarrollado múltiples opciones para mejorar la calidad de vida de estos pacientes. Objetivo: Evaluar el impacto de la implementación de un dispositivo en personas con discapacidad motriz en el municipio de Montería-Córdoba, Colombia. Para lo cual se establece el diseño, la construcción e implementación del dispositivo y, por último, se evalúa su impacto. Métodos: La investigación es de tipo tecnológico-descriptivo, debido a que, además del análisis de resultados, se experimentó en la población objeto de estudio. Para ello se tuvieron en cuenta criterios como tipo de discapacidad, edad promedio e influencia socioeconómica. Resultados: Se evaluó el impacto del dispositivo Helpbot, que interactúa con el usuario y facilita la realización de movimientos. Entre las características del dispositivo están ser portátil, inalámbrico e interfaz entre el humano y la máquina. Conclusiones: Los usuarios manifestaron sentirse cómodos con el artefacto; les facilitó el desarrollo de los ejercicios terapéuticos. El impacto positivo del dispositivo se refleja en la medida en que el 100 % de la población recomendaría el dispositivo electrónico, por lo que la intervención fue exitosa.

Introduction: There are different causes that prevent muscle movement in a person, for which in some cases there is no medical treatment that stops the progress of the disease. However, there are technological aids that allow individuals with disabilities to improve their skills to help them live autonomously and participate in society. Assisted technology has developed multiple options to improve the quality of life of these patients. Objective: To evaluate the impact of the implementation of a device in people with motor disabilities in the municipality of Montería-Córdoba, Colombia. A design, construction and implementation of the device is established and, finally, its impact is evaluated. Methods: The research is a technological-descriptive type, because, in addition to the analysis of results, it was experimented on the population under study. To this end, criteria such as type of disability, average age and socioeconomic influence were taken into account. Results: The impact of Helpbot device, which interacts with the user and facilitates the execution of movements, was evaluated. Among the features of the device are being portable, wireless and interface between human and machine. Conclusions: Users stated that they felt comfortable with the artifact. It facilitated the development of therapeutic exercises. The positive impact of the device is reflected in the extent to which 100% of the population would recommend the electronic device, therefore the intervention was successful.

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ABSTRACT Objective to describe the experiences of people with acquired physical disabilities regarding Activities of Living and to investigate the areas of attention in rehabilitation nursing care. Method qualitative research, based on descriptive phenomenology, which explored the experiences of 27 people with acquired physical disabilities in Portugal, through snowball sampling. Data analysis was conducted using the ATLAS.ti 9 software, following the coding process of Strauss and Corbin, using the theoretical nursing framework of the Roper-Logan-Tierney Model of Nursing Based on Activities of Living. Results Activities of Living emerged as a central theme, revealing challenges faced by people with acquired physical disabilities. According to the theoretical model, all Activities of Living were identified in the participants' experiences, except for the Breathing activity. Accessibility challenges in public spaces were highlighted, with sanitary facilities inadequately prepared to meet people' needs in workplaces and leisure venues, as well as in the healthcare services and in relation to their diagnostic equipment. This results in the loss of independence, autonomy, and restriction of fundamental rights. Additionally, challenges in communication and experiencing the adaptation process to disability as a period of mourning and rebirth were noted, characterized by different emotional phases. Conclusion The experiences of people with acquired physical disabilities and their individual needs regarding Activities of Living should be considered to provide rehabilitation nursing care that promotes quality of life and well-being.

RESUMEN Objetivo Describir las experiencias de las personas con discapacidad física adquirida enfrentando las Actividades de la Vida y explorar cuáles son las áreas de atención de los cuidados de enfermería de rehabilitación. Método Investigación cualitativa, basada en la fenomenología descriptiva, que exploró las experiencias de 27 personas con discapacidad física adquirida en Portugal, a través de un muestreo tipo bola de nieve. Para el análisis de datos, se utilizó el software ATLAS.ti 9 y se siguió el proceso de codificación de Strauss y Corbin, con el Modelo de Actividades de la Vida de Roper, Logan y Tierney como marco teórico de enfermería. Resultados Las actividades de vida surgieron como tema central, revelando los desafíos enfrentados por las personas con discapacidad física adquirida. De acuerdo con el modelo teórico, todas las actividades de vida fueron identificadas en las experiencias de los participantes, excepto la actividad de vida de Respirar. Se destacan las dificultades de accesibilidad en el espacio público, en las instalaciones sanitarias inadecuadamente preparadas para satisfacer las necesidades de las personas, en los lugares de trabajo y ocio, así como en los servicios de salud y en sus equipos de diagnóstico. Esto resulta en la pérdida de independencia, de autonomía y la restricción de derechos fundamentales. Se suman los desafíos en la comunicación y en la experiencia del proceso de adaptación a la discapacidad como un período de duelo y renacimiento, caracterizado por diferentes fases emocionales. Conclusión Las experiencias de las personas con discapacidad física adquirida y sus necesidades individuales, en relación con las actividades de vida, deben ser consideradas para proporcionar cuidados de enfermería de rehabilitación que promuevan la calidad de vida y el bienestar.

RESUMO Objetivo: descrever as vivências das pessoas com deficiência física adquirida face às Atividades de Vida e indagar sobre quais as áreas de atenção de cuidados de enfermagem de reabilitação. Método: pesquisa qualitativa, baseada na fenomenologia descritiva, que explorou as vivências de 27 pessoas com deficiência física adquirida em Portugal, através de uma amostragem em bola de neve. Para a análise de dados recorremos ao software ATLAS.ti 9 e seguimos o processo de codificação de Strauss e Corbin tendo como referencial teórico de enfermagem o Modelo de Atividades de Vida de Roper, Logan e Tierney. Resultados: as atividades de vida surgiram como tema central, revelando desafios enfrentados pelas pessoas com deficiência física adquirida. De acordo com o modelo teórico, todas as atividades de vida foram identificadas nas vivências dos participantes, com exceção da atividade de vida Respirar. Destacam-se dificuldades de acessibilidade no espaço público, nas instalações sanitárias inadequadamente preparadas para atender às necessidades das pessoas, nos locais de trabalho e lazer, bem como nos serviços de saúde e seus equipamentos de diagnóstico. Isto resulta na perda de independência, de autonomia e na restrição de direitos fundamentais. Acrescem os desafios na comunicação e na vivência do processo de adaptação à deficiência como um período de luto e renascimento, caracterizado por diferentes fases emocionais. Conclusão: As vivências das pessoas com deficiência física adquirida e as suas necessidades individuais relativas às atividades de vida devem ser consideradas para fornecer cuidados de enfermagem de reabilitação que promovam a qualidade de vida e o bem viver.

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Resumo Conhecer e sintetizar as expectativas e recomendações sobre a assistência odontológica como direito à saúde bucal para as pessoas com deficiência (PcD) é essencial para auxiliar tomadores de decisão. Realizou-se uma revisão integrativa, com busca nas bases PubMed, Embase, Lilacs e BVS, de artigos publicados até 30 de agosto de 2021. Técnicas de mineração de termos foram adotadas, via plataforma Rayyan. A análise de conteúdo teve por referência a teoria de welfare state. Dezesseis artigos foram incluídos. A ampliação do acesso foi uma necessidade compartilhada por todos os estudos. As principais expectativas e recomendações foram: garantia de direito civil e a reorientação do modelo de atenção em saúde bucal (modelo liberal); necessidade de qualificação profissional, atendimento odontológico sistemático e gratuito, integração entre os serviços, trabalho multiprofissional e garantia de financiamento (modelo conservador); qualificação da infraestrutura e da força de trabalho; e articulação sistêmica entre os níveis assistenciais (modelo social-democrata). Observou-se um cenário de proposições complexo e, por vezes, contraditório, sujeito a indicações com pouco potencial de mudança, especialmente se não forem considerados os desafios contemporâneos decorrentes das crises econômicas e do Estado de bem-estar social que implicam graves constrangimentos aos modelos de proteção social e aos direitos das PcD.

Abstract Knowing and synthesizing expectations and recommendations on dental care as a right to oral health for people with disabilities (PwD) is essential to assist decision-makers. An integrative review was carried out, searching PubMed, Embase, LILACS, and VHL databases for articles published up to August 30, 2021. Term mining techniques were used via the Rayyan platform. Content analysis was based on welfare state theory. Sixteen articles were included. Expanding access was a need shared by all studies. The main expectations and recommendations were guaranteeing civil rights and reorienting the oral health care model (in the countries of liberal model); the need for professional qualification, systematic and free dental care, integration between services, multidisciplinary work and guaranteed financing (conservative model); qualification of infrastructure and workforce; and systemic articulation between care levels (social democratic model). We observed a complex and sometimes contradictory scenario of proposals, subject to indications with little potential for change, especially if we ignore contemporary challenges arising from economic crises and the welfare State that imply serious constraints to the models of social protection and the rights of PwD.

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