Disability prevention, detection and assistance in primary health care services in the state of São Paulo, Brazil. / Prevenção, detecção e assistência à deficiência em serviços de atenção primária à saúde do Estado de São Paulo, Brasil.

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.

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.

Space-temporal analysis of the Specialized Services of the Health Care Network for Persons with Disabilities in Brazil.

Considering the institution of the Care Network for People with Disabilities (RCPD) in Brazil, this study analyzed the spatial distribution and the temporal trend of implementing specialized services that received financial support in the first eight years of this policy. We realized an ecological study based on the National Register of Health Facilities data from April/2012 to March/2020. A joinpoint regression was used for temporal trend analysis, and thematic maps were produced for spatial analysis of rehabilitation modalities and types of services. The most available services were physical and intellectual rehabilitation. The Southeast and Northeast regions had a higher concentration of specialized services. Despite the lower number of services, there was an average annual growth between 9.6% and 41.3%. This finding indicates an increase in specialized services for people with disabilities in the period analyzed, but care gaps are still being verified in the macro-regions of Brazil.

[Repercussions of the COVID-19 pandemic on health services for people with disabilities: report from rehabilitation professionals]. / Repercussões da pandemia de COVID-19 nos serviços de saúde para pessoas com deficiência: relato dos profissionais de reabilitação.

Several healthcare processes, including rehabilitation, require prompt initiation and cannot be interrupted. Therefore, these processes underwent important adaptations during the COVID-19 pandemic. However, it is not fully known how healthcare facilities adapted their strategies and what the results were. This study investigated how rehabilitation services were affected during the pandemic and what strategies were employed to maintain the provided services. From June 2020 to February 2021, 17 semi-structured interviews were conducted with healthcare professionals working in rehabilitation services from the Brazilian Unified National Health System (SUS), who work at one of the three levels of care, in the municipalities of Santos and São Paulo, state of São Paulo, Brazil. The interviews were recorded, transcribed, and analyzed via content analysis. The professionals reported organizational changes in their services, with the initial interruption of appointments and, subsequently, the adoption of new sanitary protocols and the gradual return to in-person and/or remote appointments. Working conditions were directly impacted, as there was a need for staffing, training, increased workloads, as well as physical and mental exhaustion among professionals. The pandemic caused a series of changes in healthcare services, some of which were interrupted due to the suspension of numerous services and appointments. Some in-person appointments were maintained exclusively for patients who presented a risk of short-term deterioration. Preventive sanitary measures and strategies for continuity of care were adopted.

Diversos processos que permeiam a assistência à saúde, incluindo a reabilitação, precisam de brevidade para ser iniciados ou não podem ser interrompidos. Sendo assim, estes passaram por importantes adaptações durante a pandemia de COVID-19. Porém, não se sabe ao certo como os equipamentos de saúde adaptaram suas estratégias e quais foram os resultados. O estudo investigou como os atendimentos em reabilitação foram afetados durante a pandemia e quais foram as estratégias para a manutenção dos serviços prestados. Entre junho de 2020 e fevereiro de 2021, realizaram-se 17 entrevistas semiestruturadas com profissionais de saúde da área da reabilitação do Sistema Único de Saúde (SUS), que atuam em um dos três níveis de atenção, nas cidades de Santos e São Paulo, Estado de São Paulo, Brasil. Os discursos foram gravados, transcritos e analisados por meio da análise de conteúdo. Os profissionais relataram mudanças organizacionais em seus serviços, com a interrupção inicial dos atendimentos e, posteriormente, com a adoção de novos protocolos sanitários e o retorno gradativo dos atendimentos presenciais e/ou a distância. As condições de trabalho foram diretamente impactadas, pois houve necessidade de dimensionamento, capacitação, ampliação de carga horária, além da sobrecarga de trabalho e do esgotamento físico e mental dos profissionais. A pandemia determinou uma série de mudanças nos serviços de saúde, por vezes descontínuas, com a suspensão de inúmeros serviços e atendimentos. Alguns atendimentos presenciais foram mantidos, apenas para os pacientes que apresentavam risco de agravo em curto prazo. Medidas sanitárias preventivas e estratégias de continuidade dos atendimentos foram adotadas.

Diversos procesos que impregnan la asistencia a la salud, incluida la rehabilitación, deben iniciarse con prontitud o no pueden interrumpirse. Por lo que estos sufrieron importantes adaptaciones durante la pandemia de COVID-19. Sin embargo, no se sabe con certeza cómo las instalaciones de salud adaptaron sus estrategias y cuáles fueron los resultados. El estudio investigó cómo se vieron afectados los servicios de rehabilitación durante la pandemia y cuáles fueron las estrategias para mantener los servicios prestados. Entre junio del 2020 y febrero del 2021, se realizaron 17 entrevistas semiestructuradas con profesionales de la salud del área de rehabilitación del Sistema Único de Salud (SUS), que actúan en uno de los tres niveles de atención, en las ciudades de Santos y São Paulo, estado de São Paulo, Brasil. Los discursos se grabaron, se transcribieron y se analizaron mediante análisis de contenido. Los profesionales relataron cambios organizacionales en sus servicios, con la interrupción inicial de la atención y, posteriormente, con la adopción de nuevos protocolos sanitarios y el regreso gradual de la atención presencial o a distancia. Las condiciones de trabajo se vieron directamente afectadas, ya que fue necesario el dimensionamiento, la capacitación, la ampliación de la carga horaria, además de la sobrecarga de trabajo y del agotamiento físico y mental de los profesionales. La pandemia determinó una serie de cambios en los servicios de salud, en ocasiones discontinuos, con la suspensión de numerosos servicios y atenciones. Se mantuvieron algunas atenciones presenciales, solo para los pacientes con riesgo de agravamiento a corto plazo. Se adoptaron medidas sanitarias preventivas y estrategias de continuidad de las atenciones.

Produção assistencial de um Centro Especializado em Reabilitação: análise de atendimentos por modalidade e especialidades / Assistance provided by a Specialized Rehabilitation Center: an analysis of the care offered per modality and specialties / Producción asistencial de un Centro Especializado de Rehabilitación: análisis de la atención por modalidad y especialidades

Introdução: a assistência à pessoa com deficiência no Brasil vem sendo ampliada ao longo dos anos, a partir do avanço das discussões sobre os Direitos Humanos e legislações publicadas pelo Ministério da Saúde. Objetivo: analisar a produção assistencial de um Centro Especializado em Reabilitação. Métodos: trata-se de estudo observacional, descritivo, transversal, realizado com dados secundários de produção ambulatorial do período de abril de 2019 a março de 2020. Resultados: foi possível observar maior número de usuários assistidos na modalidade auditiva, posteriormente na modalidade física, intelectual e visual. Houve maior proporção de atendimentos multidisciplinares na modalidade intelectual e física; ao sexo feminino, exceto na modalidade intelectual; e a crianças, exceto na modalidade auditiva. Quanto às equipes mínimas, na modalidade auditiva, o fonoaudiólogo foi o profissional que realizou maior número de atendimentos; na física, o fisioterapeuta; na intelectual, o fisioterapeuta, seguido pelo fonoaudiólogo e terapeuta ocupacional; na reabilitação visual, o terapeuta ocupacional. Houve diferença com significância estatística quando comparadas as modalidades visual e intelectual em relação ao sexo; e o número de atendimentos por especialidades quando comparado à faixa etária. Conclusão: o estudo retrata a estrutura e oferta de atendimentos multidisciplinares realizados para as pessoas com deficiência que frequentam um serviço especializado em reabilitação. (AU)

Introduction: assistance to people with disabilities in Brazil has been expanded over the years, from the advancement of discussions on Human Rights, and legislation published by the Ministry of Health. Objective: to analyze the care production of a Specialized Center in Rehabilitation. Methods: this is an observational, descriptive, cross-sectional study, conducted with secondary data of outpatient production from April 2019 to March 2020. Results: it was possible to observe a greater number of users assisted in the auditory modality, later in the physical, intellectual and visual modality, there was a higher proportion of multidisciplinary care in the intellectual and physical modality; female gender, except in the intellectual modality; and children, except in the auditory mode. As for the minimum teams, in the auditory modality the speech therapist was the professional who performed the highest number of consultations; in physics the physiotherapist; in the intellectual the physiotherapist, followed by the speech therapist and occupational therapist; in visual rehabilitation the occupational therapist. There was a statistically significant difference when comparing the visual and intellectual modalities in relation to gender; and the number of visits by specialties when compared to age group. Conclusion: the study portrays the structure and offer of multidisciplinary care provided to people with disabilities, who attend a specialized service in rehabilitation. (AU)

Introducción: la asistencia a las personas con discapacidad em Brasil se ha ampliado a lo largo de los años, a partir del avance de las discusiones sobre Derechos Humanos y la legislación publicada por el Ministerio de Salud. Objetivo: analizar la producción asistencial de un Centro Especializado em Rehabilitación. Métodos: se trata de un estúdio observacional, descriptivo, transversal, realizado con datos secundarios de producción ambulatoria de abril de 2019 a marzo de 2020. Resultados: fue posible observar un mayor número de usuários atendidos en la modalidade auditiva, posteriormente en la modalidade física, intelectual y visual, hubo una mayor proporción de atención multidisciplinaria en la modalidade intelectual y física; género femenino, excepto en la modalidade intelectual; y niños, excepto em el modo auditivo. En cuanto a los equipos mínimos, en la modalidade auditiva el logopeda fue el profesional que realizó mayor número de consultas; em física el fisioterapeuta; em el intelectual el fisioterapeuta, seguido por el logopeda y el terapeuta ocupacional; em rehabilitación visual el terapeuta ocupacional. Hubo uma diferencia estadísticamente significativa al comparar las modalidades visuales e intelectuales em relación con el género; y el número de visitas por especialidades em comparación con el grupo de edad. Conclusión: el estúdio retrata la estructura y la oferta de atención multidisciplinaria prestada a las personas con discapacidad, que asisten a un servicio especializado em rehabilitación. (AU)

Specialized Rehabilitation Centers (CER) in the SUS and the impact of the covid-19 pandemic / Centros Especializados em Reabilitação (CER) no SUS e o impacto da pandemia de covid-19

ABSTRACT OBJECTIVE To analyze the impact of the covid-19 pandemic on the functioning of Specialized Rehabilitation Centers (CER) in the SUS. METHODS An analysis of the variation in outpatient production of the CER was carried out based on data from the Outpatient Information System of the Unified Health System (SIA-SUS) from March 2019 to December 2021. Such results were compared with CER managers' perceptions about the impacts of the pandemic on the units, measured by a web survey applied between November 2020 and February 2021. Monthly averages of 247 procedures were calculated, organized into 18 groups, for three periods - year before the pandemic (YBP) and first (YP1) and second (YP2) years of the pandemic. Through the online form, information was collected on: operation and organization of services; post-covid-19 rehabilitation; actions to support the needs of users and professionals; strategies and challenges experienced. RESULTS There was a 33.3% reduction in the total number of procedures in YP1 compared to YBP. There were no reductions in procedures performed by nurses and for ostomates. There was greater impairment for group activities, visual therapies and home visits. In YP2, there was a recovery of averages in relation to YBP in 11 groups of procedures, with an increase of 104.1% in Cardiorespiratory Physiotherapy. In the answers to the online form, 91.7% of the managers indicate structural and/or organizational changes in the CER, such as: creation of prioritization criteria for assistance; introduction of telerehabilitation; changes in the work process and; provision of professional training. Half of the CER already treated people with covid-19 sequelae, but not all of them had been trained to do so. Limitations in participation and social support for PWD were identified. CONCLUSIONS There was a severe impact of the covid-19 pandemic on the CER. Added to the damming up of previous demands are those of post-covid-19 users, configuring a challenging picture. It is necessary to strengthen the Care Network for Persons with Disabilities, with expansion and greater integration of services and a more inclusive organization to overcome these challenges.

RESUMO OBJETIVO Analisar o impacto da pandemia de covid-19 no funcionamento dos Centros Especializados em Reabilitação (CER) no SUS. MÉTODOS Realizou-se análise da variação da produção ambulatorial dos CER com base nos dados do Sistema de Informações Ambulatoriais do Sistema Único de Saúde (SIA-SUS) no período de março de 2019 a dezembro de 2021. Tais resultados foram cotejados com as percepções de gestores de CER acerca dos impactos da pandemia nas unidades, aferidas por websurvey aplicado entre novembro de 2020 e fevereiro de 2021. Foram calculadas as médias mensais de 247 procedimentos, organizados em 18 grupos, para três períodos - ano anterior à pandemia (APP), primeiro (AP1) e segundo (AP2) anos de pandemia. Por meio do formulário on-line foram coletadas informações sobre: funcionamento e organização dos serviços; reabilitação pós-covid-19; ações de apoio às necessidades de usuários e profissionais; estratégias e desafios vivenciados. RESULTADOS Houve redução de 33,3% do total de procedimentos em AP1 em relação a APP. Não foram reduzidos procedimentos realizados por enfermeiros e para pessoas ostomizadas. Ocorreu maior prejuízo para atividades em grupo, terapias visuais e visitas domiciliares. Em AP2, houve recuperação das médias em relação a APP em 11 grupos de procedimentos, com aumento de 104,1% de Fisioterapia Cardiorrespiratória. Nas respostas ao formulário on-line, 91,7% dos gestores indicam mudanças estruturais e/ou organizacionais nos CER como: criação de critérios de priorização para atendimentos; introdução de telerreabilitação; modificações no processo de trabalho e; disponibilização de capacitações profissionais. Metade dos CER já atendiam pessoas com sequelas de covid-19, mas nem todos haviam sido instrumentalizados para tanto. Identificaram-se limitações na participação e no suporte social para PCD. CONCLUSÕES Houve severo impacto da pandemia de covid-19 nos CER. Ao represamento de demandas prévias se somam aquelas de usuários pós-covid-19, configurando um quadro desafiador. Faz-se necessário fortalecimento da Rede de Cuidados à Pessoa com Deficiência, com ampliação e maior integração dos serviços e organização mais inclusiva para a superação desses desafios.

Análise da Política de Atenção Integral à Pessoa com Deficiência em uma capital da Região Nordeste do Brasil / Analysis of the Comprehensive Care Policy for Persons with Disabilities in a capital city in the Northeast Region of Brazil

Resumo Na cidade do Recife, a primeira formulação de uma política de saúde direcionada às pessoas com deficiência (PCD) ocorreu 14 anos após a publicação da Política Nacional. Nesse sentido, o artigo analisou o processo de formulação da Política Municipal de Atenção Integrada à Saúde da Pessoa com Deficiência da cidade do Recife em 2016. Por meio de um estudo de caso, foram estudados o contexto, atores, conteúdo e processo de formulação da política através da realização de análise documental e entrevistas com gestores, representantes do Conselho de Saúde e de entidades representativas da PCD. A Política estudada foi formulada em um macrocontexto de vulnerabilidade social acentuado pelo golpe de 2015 e por medidas severas de austeridade fiscal que têm impactado desproporcionalmente as PCD. No microcontexto, percebeu-se influência da área de Direitos Humanos, das eleições municipais e da epidemia da síndrome congênita pelo Zika vírus, que descortinou um vazio assistencial. Houve incipiente participação das PCD, que desconhecem seu conteúdo e pouco acompanham sua implementação. A participação social é fundamental para atender às necessidades das PCD, por isso, pode-se afirmar que é imperativo o estabelecimento de uma relação dialógica em torno da Política e dos desafios de sua implementação.

Abstract In the city of Recife, the first formulation of a health policy aimed at people with disabilities (PWD) took place 14 years after the publication of the National Policy. In this sense, the article has analyzed the process of formulating the Municipal Policy for Integrated Health Care for People with Disabilities in the city of Recife in 2016. Through a case study, the context, actors, content and process of policy formulation were studied through document analysis and interviews with managers, representatives of the Health Council and representative entities of PWD. The Policy studied was formulated in a macro context of social vulnerability accentuated by the 2015 coup and by severe fiscal austerity measures that have disproportionately impacted PWDs. In the micro context, the influence of the Human Rights area, municipal elections and the epidemic of the Congenital Syndrome by the Zika Virus was noticed, which revealed a care void. There was an incipient participation of PWDs, which are unaware of its content and rarely follow its implementation. Social participation is essential to meet the needs of PWDs, so it can be said that it is imperative to establish a dialogic relationship around the Policy and the challenges of its implementation.

Care coordination Experiences of Low-Income Parents of Children and Youth with Special Health Care Needs: An Exploratory Study.

OBJECTIVE: To explore parent perspectives on barriers, facilitators, and priorities related to coordinating care for children and youth with special health care needs (CYSHCN). METHODS: Thirty-nine parents of Medicaid-eligible CYSHCN participated in focus groups and completed a brief survey about their child's health insurance coverage, access to specialized services, and need for support with service coordination. Survey data were analyzed using descriptive statistics. Focus group data were analyzed by multiple independent coders using an approach that combines inductive reasoning with predetermined coding strategies. RESULTS: Sixty-seven percent of parents reported that they needed care coordination support. Qualitative data were organized into three main themes: the work of caregiving; the impact of caregiving on multiple aspects of parents' lives; and caregivers' needs related to emotional acceptance, service referrals and navigation, and developmental transitions. CONCLUSIONS: Findings support importance of services such as medical homes, care coordinators, peer navigators, respite care, and transition planning.

Efectos de la pandemia por COVID-19 en la atención de personas con discapacidad psicosocial: perspectiva de trabajadores / COVID-19 pandemic effects on the care of people with psychosocial disabilities: workers' perspective

INTRODUCCIÓN: La pandemia de COVID-19 alteró el funcionamiento de los sistemas de salud y, particularmente, la provisión de servicios destinados a personas con discapacidad psicosocial de un modo pendiente de análisis en Argentina. El objetivo fue caracterizar los efectos de la pandemia de COVID-19 en los servicios de atención dirigidos a personas con discapacidad psicosocial en Rosario (Santa Fe), Resistencia (Chaco) y el Área Metropolitana de Buenos Aires desde la perspectiva de sus trabajadores durante 2020-2021. MÉTODOS: Se realizó un estudio exploratorio y descriptivo a partir de entrevistas a 53 trabajadores de tres tipos de servicios de rehabilitación (orientados a dar apoyo para la socialización, el trabajo o la vivienda), en dos momentos (fin de 2020 y mediados de 2021). Se calcularon frecuencias y se realizó un análisis temático. RESULTADOS: Hubo una afectación amplia y duradera de los servicios, que se tornaron menos accesibles y eficaces para contribuir a la rehabilitación. Se observaron aspectos comunes, como la adaptación para seguir funcionando, la centralidad de la tecnología y el impacto subjetivo en los trabajadores, marcado por el cansancio. Al año de la pandemia, dos tercios de los servicios orientados a la socialización estaban muy afectados o cerrados. DISCUSIÓN: A partir de la descripción y análisis de cómo se vieron afectados los servicios de rehabilitación, se abre el interrogante respecto de su futuro y el rumbo que tomará la reforma en salud mental.

Now Is the Time: A Primer on How to Be a Disability Education Champion in Your Medical School.

ABSTRACT: One in four noninstitutionalized adults in the United States lives with a disability. People with disabilities have frequent interactions with the medical community and the healthcare system yet experience disparities in access and outcomes. The Association of American Medical Colleges has included disability in its definition of diversity as one of the aspects of patient care that may affect health equity. However, training in the lived experience of disability is not always included in medical education. Physiatrists make excellent disability champions in medical schools, given their training and experience in the care of individuals with disabilities. Here, we describe strategies for physiatrists to increase disability education in medical schools and an overview of standards and tools (Liaison Committee on Medical Education standards; Commission on Osteopathic College Accreditation standards; International Classification of Functioning, Disability and Health language; and the Core Competencies on Disability for Health Care Education published by the Alliance for Disability in Health Care Education) physiatrists can use to facilitate interactions with medical school educational leadership. Specific examples are provided along with a framework to guide the development of disability champions in medical schools.

Influencing Medical Students' Knowledge and Attitudes Related to Disability: A Randomized Controlled Trial.

PURPOSES: The aims of the study were to evaluate and to compare the efficacy of an online and a traditionally delivered undergraduate elective course in improving medical students' disability-related knowledge and attitudes. METHODS: A randomized controlled design was implemented. Participants were medical students randomly assigned into summer 8-wk disability and the society (OT100) online course, OT100 traditional course, or wellness and lifestyles (PT100) control. Demographics were collected in addition to participants' level disability knowledge and attitudes toward people with disability scale scores (1 wk before the semester and 1 wk after it). Multivariate analysis of covariance using general linear model was conducted to evaluate groups' differences in main outcome measures. RESULTS: In total, 198 undergraduate medical students successfully completed the study conditions: OT100 online (n = 74), OT100 traditional (n = 59), and PT100 (n = 65). OT100 groups (traditional and online) change scores were statistical similar for disability knowledge (P = 0.966) and attitudes (P = 0.705) but significantly better (P < 0.001) than the control group. CONCLUSIONS: OT100 course delivered traditionally or online seemed effective in improving medical students' disability knowledge and attitudes toward people with disability. More studies are needed to create effective methods improving healthcare professionals' disability-related knowledge and attitudes.

Barriers to the access of people with disabilities to health services: a scoping review / Barreiras ao acesso das pessoas com deficiência aos serviços de saúde: uma revisão de escopo

ABSTRACT OBJECTIVE To analyze the scientific evidence regarding barriers to the access of people with disabilities to health services. METHODS A scoping review was carried out from the main question: "What are the main barriers that people with disabilities face in accessing health services?" The articles were surveyed in July 2019 in six scientific literature databases. Of the 1,155 documents identified in the searches, after selection by title and abstract, 170 publications were read in full and, thus, 96 articles were included and categorized according to the theoretical framework. RESULTS The main barriers indicated by the users of the service were: communication failure between professionals and patient/caregiver; financial limitations; attitudinal/behavioral issues; scarce service provision; organizational and transport barriers. The main barriers presented by service providers were: lack of training to professionals; failure of the health system; physical barriers; lack of resources/technology; and language barriers. CONCLUSIONS It was evident that people with disabilities face several barriers when trying to access the health services they need and that users and health professionals have distinct and complementary views on difficulties.

RESUMO OBJETIVO Analisar as evidências científicas relativas às barreiras para o acesso de pessoas com deficiência aos serviços de saúde. MÉTODOS Realizou-se uma revisão de escopo estabelecendo-se a perguntanorteadora: "Quais são as principais barreiras que as pessoas com deficiência enfrentam no acesso a serviços de saúde?" O levantamento dos artigos foi realizado em julho de 2019, em seis bases de dados de literatura científica. Dos 1.155 documentos identificados nas buscas, após seleção por título e resumo, foram lidas na íntegra 170 publicações e, após leitura, 96 artigos foram incluídos e categorizados conforme referencial teórico. RESULTADOS As principais barreiras indicadas pelos usuários do serviço foram: comunicação falha entre profissionais e paciente/cuidador; limitações financeiras; questões atitudinais/comportamentais; oferta de serviços escassa; barreiras organizacionais e de transporte. As principais barreiras apresentadas pelos prestadores de serviços foram: falta de treinamento/capacitação aos profissionais; falha do sistema de saúde; barreiras físicas; falta de recursos/tecnologia e barreiras de idioma. CONCLUSÕES Ficou evidente que as pessoas com deficiência enfrentam diversas barreiras ao tentarem acesso aos serviços de saúde de que necessitam e que usuários e profissionais de saúde têm visões distintas e complementares sobre as dificuldades.

Os grupos condutores na governança e implementação da Rede de Cuidados à Pessoa com Deficiência no SUS / The conducting groups in the governance and implementation of the Care Network for People with Disabilities in the SUS

Resumo A Rede de Cuidados à Pessoa com Deficiência estabeleceu a criação de Grupos Condutores Estaduais visando implementar Diretrizes Clínicas e Protocolos e acompanhar as ações desta Rede. O objetivo deste trabalho foi investigar o papel dos grupos condutores na governança e implementação da referida Rede, analisando sua constituição e ações realizadas. Realizou-se pesquisa descritiva, com abordagem qualitativa, multicêntrica, avaliando a fase de implementação da política, realizada nas cinco regiões do país; analisaram-se documentos publicados entre abril/2012 a dezembro/2018, relacionados aos grupos condutores em oito estados. Emergiram duas categorias como resultado da análise de conteúdo: instituição e composição dos grupos condutores e ações realizadas pelos grupos. Identificou-se a instituição de grupo condutor específico para a Rede em seis estados, e em dois estados a condução realiza-se pelos Grupos Estaduais das Redes de Atenção à Saúde. Observou-se heterogeneidade na composição dos grupos e na realização das atribuições previstas, refletindo indefinições da portaria e desafios de cada estado para a regionalização, participação social, planejamento, acompanhamento e monitoramento da rede. Entretanto, destacou-se o protagonismo destes Grupos enquanto espaço de governança gerencial. Salienta-se a necessidade da continuidade de investimentos financeiros, políticos e de gestão para garantir resolutividade, governança e gestão democrática da Rede.

Abstract The Care Network for People with Disabilities established the creation of State Conducting Groups to implement Clinical Guidelines and Protocols and monitor the actions of this Network. This work aimed to investigate the role of conducting groups in the governance and implementation of the referred Network, analyzing its constitution and actions taken. Descriptive research was carried out, with a qualitative, multicentric approach, evaluating the implementation phase of the policy, carried out in the five regions of the country; documents published between April/2012 and December/2018 were analyzed, related to conducting groups in eight states. Two categories emerged as a result of the content analysis: institution and composition of the driving groups and actions carried out by the groups. The institution of a specific conduction group for the Network was identified in six states, and in two states the conduction is carried out by the State Groups of the Health Care Networks. Heterogeneity was observed in the composition of the groups and in the accomplishment of the foreseen attributions, reflecting the lack of definitions of the ordinance and challenges of each state for regionalization, social participation, planning, follow-up and monitoring of the network. However, the protagonism of these Groups was highlighted as a space for managerial governance. The need for continuity of financial, political and management investments is highlighted to guarantee resolution, governance and democratic management of the Network.

Transitioning patients with developmental disabilities to adult care.

The pre-visit questionnaire, instructive videos, and Web resources detailed here can help you play a pivotal role in planning, commencing, and solidifying this transition.

Oral Health Among Children and Youth With Special Health Care Needs.

OBJECTIVES: We sought to estimate the prevalence of oral health problems and receipt of preventive oral health (POH) services among children and youth with special health care needs (CYSHCN) and investigate associations with child- and family-level characteristics. METHODS: We used pooled data from the 2016-2018 National Survey of Children's Health. The analytic sample was limited to children 1 to 17 years old, including 23 099 CYSHCN and 75 612 children without special health care needs (non-CYSHCN). Parent- and caregiver-reported measures of oral health problems were fair or poor teeth condition, decayed teeth and cavities, toothaches, and bleeding gums. POH services were preventive dental visits, cleanings, tooth brushing and oral health care instructions, fluoride, and sealants. Bivariate and multivariable logistic regression analyses were conducted. RESULTS: A higher proportion of CYSHCN than non-CYSHCN received a preventive dental visit in the past year (84% vs 78%, P < .0001). Similar patterns were found for the specific preventive services examined. However, CYSHCN had higher rates of oral health problems compared with non-CYSHCN. For example, decayed teeth and cavities were reported in 16% of CYSHCN versus 11% in non-CYSHCN (P < .0001). In adjusted analyses, several factors were significantly associated with decreased prevalence of receipt of POH services among CYSHCN, including younger or older age, lower household education, non-English language, lack of health insurance, lack of a medical home, and worse condition of teeth. CONCLUSIONS: CYSHCN have higher rates of POH service use yet worse oral health status than non-CYSHCN. Ensuring appropriate use of POH services among CYSHCN is critical to the reduction of oral health problems.

CAPABLE program improves disability in multiple randomized trials.

BACKGROUND: Programs to reduce disability are crucial to the quality of life for older adults with disabilities. Reducing disability is also important to avert unnecessary and costly hospitalizations, relocation, or nursing home placements. Few programs reduce disability and few have been replicated and scaled beyond initial research settings. CAPABLE is one such program initially tested in a randomized control trial and has now been tested and replicated in multiple settings. CAPABLE, a 10-session, home-based interprofessional program, provides an occupational therapist, nurse, and handyworker to address older adults' self-identified functional goals by enhancing individual capacity and home environmental supports. We examine evidence for the CAPABLE program from clinical trials embedded in different health systems on outcomes that matter most to older adults with disability. METHODS: Six trials with peer-reviewed publications or reports were identified and included in this review. Participants' outcomes included basic and instrumental activities of daily living (ADLs, IADLs), fall efficacy, depression, pain, and cost savings. RESULTS: A total of 1144 low-income, community-dwelling older adults with disabilities and 4236 matched comparators were included in the six trials. Participants were on average ≥74-79 years old, cognitively intact, and with self-reported difficulty with ≥1 ADLs. All six studies demonstrated improvements in ADLs and IADLs, with small to strong effect sizes (0.41-1.47). Outcomes for other factors were mixed. Studies implementing the full-tested dose of CAPABLE showed more improvement in ADLS and cost savings than studies implementing a decreased dose. CONCLUSIONS: The CAPABLE program resulted in substantial improvements in ADLs and IADLs in all six trials with other outcomes varying across studies. A dose lower than the original protocol tested resulted in less benefit. The four studies examining cost showed that CAPABLE saved more than it costs to implement.

Predictors of Use of Preventative Health Services for People with Disabilities in Taiwan.

People with disabilities display less use of preventive health services, such as health examinations, flu vaccinations, Pap smears and breast screening, but evidence has shown that preventive health services can detect or even prevent serious diseases and medical problems. Therefore, identifying the factors associated with the use of preventive health services is important for people with disabilities. This study examined the use of preventive health services by people with disabilities and identified other associated factors for people with disabilities. The research used social demographics and the World Health Organization Disability Assessment Schedule 2.0 (WHODAS 2.0) 12 items to measure activity and participation (AP) and other factors; there were 742 people with disabilities recruited with stratified proportional sampling. The data were collected through face-to-face interviews. The findings revealed that the common types of preventive services accessed by people with disabilities were health examinations and flu vaccinations; most of them had only used one preventive health service in the past year. The factors of having caregivers of spouses (OR = 1.74), perceived good health (OR = 1.26), and less limitation of AP (OR = 0.99) were significantly associated with the use of preventive services (p < 0.01). The study found a significant association between having children as caregivers and the non-use of Pap smears and breast screening services among women, providing valuable evidence for the distribution of the use of preventive health services for people with disabilities. Furthermore, the study highlighted the present status of disparities in the use of preventive services for people with disabilities and should encourage a boost in the adjustment of the medical environment and service resource allocation by the Taiwanese government for people with disabilities.

Percepción de la rehabilitación visual: Una mirada desde las personas con baja visión / Percepção da reabilitação da visão: uma visão de pessoas com baixa visão / Understanding Vision Rehabilitation: A Perspective from People with Low Vision

Introducción: la baja visión es una categoría de discapacidad visual que requiere un proceso de rehabilitación para maximizar la función visual y permitir a la persona desarrollar habilidades compensatorias para mejorar su funcionalidad. Objetivo: describir las percepciones de las personas con baja visión que recibieron servicios de rehabilitación funcional visual en dos centros de atención, frente al aporte de los servicios y barreras identificadas en el proceso. Metodología: Estudio cualitativo de tipo exploratorio. Se realizaron 14 entrevistas semiestructuradas a personas que realizaron su rehabilitación visual en dos centros de atención: Uno en Bogotá con un proceso de atención interdisciplinario y otro en Bucaramanga con un proceso de atención de menor interdisciplinariedad. El análisis siguió el proceso de descubrimiento, codificación y relativización de los datos. Resultados: Las personas que asistieron al centro de menor interdisciplinariedad, reconocieron el aporte de la rehabilitación para el desarrollo de actividades cotidianas básicas e instrumentales. Quienes asistieron al centro de mayor interdisciplinariedad destacaron los aportes de psicología, orientación y movilidad, y trabajo social como fundamentales. Pese a lo anterior, en las dos ciudades persisten barreras: dificultades para adquirir ayudas ópticas, de movilidad, arquitectónicas y para la inclusión laboral. Discusión: Se evidencia la necesidad de garantizar una rehabilitación funcional interdisciplinaria que contemple intervenciones adicionales a la prescripción de ayudas ópticas. Conclusiones: Los servicios interdisciplinarios obtienen mejores resultados en cuanto a las transformaciones que logran las personas en: aceptación de la condición de baja visión, movilidad, acceso a tecnología, y reconocimiento de derechos.

Introduction: Low vision is a category of visual impairment that needs a rehabilitation process to maximize visual function and provide the individual with compensatory skills to improve their functioning. Objective: To describe the perception of people with low vision who received functional vision rehabilitation in two rehabilitation centers in relation to service provision and barriers identified in the process. Materials and Methods: A qualitative exploratory study was conducted using 14 semi-structured interviews in people who received low vision rehabilitation in two rehabilitation centers: one in Bogotá providing interdisciplinary vision rehabilitation and another in Bucaramanga with less interdisciplinary vision rehabilitation. After analysis, data were recovered, classified and transformed. Results: People who attended the less interdisciplinary rehabilitation center recognized the contribution of rehabilitation for basic and instrumental activities of daily living. Those who attended the rehabilitation center providing greater interdisciplinary vision rehabilitation highlighted the contributions made from the psychology, orientation and mobility skills, and social work fields as essential. Despite this, barriers still exist in both cities: difficulties in acquiring optical, mobility and architectural aids, as well as in labor inclusion. Discussion: There is a clear need to ensure interdisciplinary vision rehabilitation that includes additional interventions for optical aid prescription. Conclusion: Best results are obtained by interdisciplinary vision rehabilitation in terms of transformations that individuals achieve in acceptance of the low vision condition, mobility, access to technology and rights recognition.

Introdução: A baixa visão é uma categoria de deficiência visual que precisa de um processo de reabilitação para maximizar a função visual e permitir que a pessoa desenvolva habilidades compensatórias para melhorar seu desempenho. Objetivo: Descrever as percepções das pessoas com baixa visão que receberam reabilitação visual funcional em dois centros de reabilitação em relação à prestação de serviços e às barreiras identificadas no processo. Materiais e Métodos: Um estudo exploratório qualitativo foi conduzido utilizando 14 entrevistas semiestruturadas em pessoas que receberam reabilitação visual em dois centros de reabilitação visual: um em Bogotá com um processo de reabilitação da visão interdisciplinar e outro em Bucaramanga com reabilitação da visão menos interdisciplinar. Após análise, os dados foram recuperados, classificados e transformados. Resultados: As pessoas que compareceram ao centro de reabilitação menos interdisciplinar reconheceram a contribuição da reabilitação para atividades básicas e instrumentais da vida diária. As pessoas que compareceram ao centro de reabilitação de maior interdisciplinaridade ressaltaram como essenciais as contribuições feitas a partir da psicologia, habilidades de orientação e mobilidade, e campos de trabalho social. Apesar do acima exposto, ainda existem barreiras em ambas as cidades: dificuldades na aquisição de meios ópticos, de mobilidade e arquitetônicos, assim como na inclusão trabalhista. Discussão: Há uma clara necessidade de garantir a reabilitação funcional interdisciplinar que contemple intervenções adicionais para a prescrição de auxílios ópticos. Conclusão: Os melhores resultados são obtidos pela reabilitação interdisciplinar em termos das transformações que as pessoas alcançam na aceitação da condição de baixa visão, mobilidade, acesso à tecnologia e reconhecimento de direitos.

Integration of Chronic Disability Management in a Medical Student Curriculum.

ABSTRACT: Increasing exposure to the needs of patients with chronic disability is important in fostering confidence and comfort in disability knowledge and management among medical students and residents of all disciplines. The 2013 Association of American Medical Colleges Graduation Survey of graduating medical students revealed that 33% expressed inadequate exposure to disability management and rehabilitative care. To address this, a 3- to 4-wk rehabilitation elective course was modified to include lectures, media-based reflections, and a hands-on wheelchair experience. Responses and reflections from students from November 2015 to February 2019 were analyzed to assess the impact of the intervention on medical student knowledge and clinical practice using a disability pretest and posttest design. Preintervention data revealed limited knowledge of terminology in disability health that improved greatly in the postelective assessment. Medical students also gained knowledge on disability laws, available resources, and improved identification of appropriate accommodations to limit barriers to care. Moreover, this novel, interdisciplinary rehabilitation elective experience increased medical student knowledge and exposure of disability management. Incorporating these changes into the medical school curriculum will be invaluable in training future physicians to close the gap in access to care for persons with disabilities.

What Happens at a Dental Surgery When the Patient is a Child with Autism Spectrum Disorder? An Italian Study.

Oral health care can be a difficult experience for a child with Autism Spectrum Disorder (ASD), for their family and for the dentist. The purpose of this study is to provide an understanding of the challenges experienced by the three aforementioned figures during oral care treatment. A cohort of 275 parents of typical development children (TD), 57 parents of children with ASD (3-15 years old) and by 61 dentists, completed two different multiple choices questionnaires. The data obtained show a great difficulty in the treatment of children with ASD as seen by the dentists and by the parents. This is due to: caregivers' demographic issues; difficulties encountered before and during the dental examination; scarce presence of experts in ASD treatment.