RESUMO
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.
RESUMO
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.
RESUMO
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.
RESUMO
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.
RESUMO
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.
RESUMO
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.
RESUMO
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.
RESUMO
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.
RESUMO
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.