Morte em vida de Severina: uma cartografia do cuidado com as pessoas (com deficiência) / The Death in Life of Severina: a cartography of care for people (with disabilities)

Resumo Neste artigo, analisa-se o acesso ao cuidado da saúde que produz vulnerabilidades, bem como as estratégias de resistência de usuários(as). No estudo, fruto de pesquisa qualitativa com abordagem cartográfica, recorre-se ao conceito-ferramenta "usuária-guia", ao analisar a trajetória de uma mulher de 48 anos de idade com deficiência visual, acompanhada em pesquisa num centro especializado em reabilitação da cidade de João Pessoa, Paraíba, Brasil. Entre outubro de 2020 e abril de 2021, foram realizados 12 encontros virtuais com a usuária e duas entrevistas com profissionais do serviço, registrados em diários de campo. A análise gerou os seguintes eixos de interpretação: Várias mortes em vida, Severina; A fabricação de um corpo Severina: marcas de uma saúde prescritora do viver; e Teima a vida Severina, em sua produção de redes vivas de cuidado. Evidenciou-se que a organização da atenção à saúde direcionada a certos grupos leva à produção de vulnerabilidades e promove a morte (ou mesmo muitas mortes) em vida. Ao mesmo tempo, identificaram-se possibilidades de construção de outros fluxos, em que seria possível constituir, para si, meios de romper com o que se estrutura para nossas rotas, permitindo produzir furos nos muros.

Abstract This article analyzes the access to health care that produces vulnerability, as well as the resistance strategies of users. The study, resulting from qualitative research with a cartographic approach, uses the concept-tool "guide-user" to analyze the trajectory of a 48-year-old woman, with visual impairment, accompanied in research at a specialized center in rehabilitation in the municipality of João Pessoa, Paraíba, Brazil. Between October 2020 and April 2021, 12 virtual meetings were held with the user and two interviews with service professionals, recorded in field diaries. The analysis generated the following interpretation axes: Several Deaths in Life, Severina; The fabrication of a Severina body: marks of a prescriptive health of living; and Severina insists on life, in her production of living networks of care. It was evidenced that the organization of health care directed at certain groups of people leads to the production of vulnerabilities and promotes death (or even many deaths) during life. At the same time, possibilities for the construction of other flows were identified, in which it would be possible to constitute, for themselves, means of breaking with what is structured for our routes, allowing to produce holes in the walls.

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.

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.

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.

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.

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.

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.

Mothers of a Child with Cerebral Palsy: Perception on the Diagnosis Moment and the Child's General and Oral Health

ABSTRACT Objective: To analyze the perception of mothers of children with Cerebral Palsy (CP) on the diagnosis moment and the child's health. Material and Methods: Research with a qualitative approach, carried out with 19 mothers of children with CP, in a public higher education institution, in the state of Minas Gerais, Brazil. For data collection, the interview was used and for data interpretation, content analysis. Results: Mothers reported that the diagnosis of a child with CP resulted in major changes in the family's daily life, increasing their responsibility and demands. After the diagnosis, mothers revealed oscillating feelings, with progressively replaced by her motherly ability to take care, reestablishing the psychic balance. The health associated with the absence of disease and curative practices was frequently observed. Mothers reported a great concern with oral hygiene habits and frequent visits to the dentist. Conclusion: The diagnosis of a child with CP led to changes in the family's priorities and routine. After the moment of anguish, uncertainty and fear, the mothers accepted the reality. The biomedical principle significantly influenced the mother´s perception of health, being health perceived as the absence of disease and curative practices. In relation to oral health, practices widely spread and recommended by the media and health services, such as correct tooth brushing, showed an orientation of patients to maintain oral health.

Redecin Brasil: a construção metodológica de um estudo multicêntrico para avaliação da rede de cuidados à pessoa com deficiência / Redecin Brazil: constructing the methodology of a multicentric study to evaluate the care network for people with disabilities / Redecin Brasil: la construcción metodológica de un estudio multicéntrico para evaluación de la red de cuidados a la persona con discapacidad

Este artigo objetiva apresentar o percurso metodológico do estudo Redecin - Avaliação da Implantação da Rede de Cuidados à Pessoa com Deficiência (RCPCD) no Brasil. Trata-se de estudo multicêntrico, transversal, de delineamento híbrido, envolvendo instrumentos quantitativos por meio de análise documental e questionários estruturados, e qualitativos com entrevistas de atores-chave sobre a implantação da RCPCD. Após discussões com atores do Ministério da Saúde e do grupo de pesquisa, adotou-se a configuração de região/macrorregião de saúde envolvendo todos os componentes da rede descritos na portaria que institui essa rede. O estudo possui representatividade em oito estados nas cinco regiões geográficas brasileiras. O uso de método híbrido, múltiplas fontes de evidências e incorporação do conceito de Rede de Atenção à Saúde foram fundamentais para se estruturar uma avaliação como instrumento que almeja subsidiar processos de tomada de decisão em saúde. (AU)

This article presents the methodological path of the Redecin study - Evaluation of the Implementation of the Care Network for People with Disabilities (RCPCD) in Brazil. We conducted a multicentric cross-sectional study adopting a hybrid design involving quantitative instruments (document analysis and structured questionnaires) and qualitative methods (interviews with key informants about the implementation of the RCPCD). After discussions with informants from the Ministry of Health and research group, a health region/macro region configuration was adopted, involving all the components of the RCPCD described in the Ministerial Order that created the network. The study was shown to be representative in eight states in the country's five geographical regions. The use of a hybrid design and multiple evidence sources, and the incorporation of the concept of health care network were fundamental to structuring the evaluation as an instrument that aims to support health care decision-making processes. (AU)

El objetivo de este artículo es presentar la trayectoria metodológica del estudio Redecin - Evaluación de la implantación de la Red de Cuidados a la Persona con Discapacidad (RCPCD) en Brasil. Se trata de un estudio multicéntrico, transversal, de delineación híbrida, envolviendo instrumentos cuantitativos, por medio de análisis documental y cuestionarios estructurados y cualitativos, con entrevistas de actores-clave sobre la implantación de la RCPCD. Después de discusiones con actores del Ministerio de la Salud y del grupo de investigación, se adoptó la configuración de región/macrorregión de salud, envolviendo a todos los componentes de la red que se describen en el decreto administrativo que constituye esta red. El estudio tiene representatividad en ocho estados en las cinco regiones geográficas brasileñas. El uso del método híbrido, las múltiples fuentes de evidencias y la incorporación del concepto de Red de Atención de la Salud fueron fundamentales para estructurar una evaluación en la condición de instrumento que anhela subsidiar procesos de toma de decisión en salud. (AU)

Barreras arquitectónicas en establecimientos sanitarios contribuyen a la discapacidad en Honduras / Architectural barriers in healthcare buildings contribute to disabilities in Honduras

Antecedentes. Cobertura Universal en Salud es uno de los Objetivos de Desarrollo Sostenible. Las personas con dis-capacidad suelen tener mayores dificultades de acceso a la salud que el resto de la población. Factores del entorno como el diseño y las construcciones pueden ser una barrera o un facilitador. Ob-jetivo. Evaluar lascaracterísticas de accesibilidad en el diseño y las ayudas técnicas para la movilidad en los establecimientos de salud en zonas de realización del servicio médico social, Carre-ra de Medicina UNAH, cohorte 2013-2014. Métodos. En base a principios de diseño universal se evaluaron barreras y facilitado-res para el acceso a la salud en establecimientos de salud, inclu-yendo centros de atención primaria y hospitales. Resultados. Se evaluaron 176 establecimientos en 17 departamentos, 154 uni-dades de atención primaria (UAP) y 22 hospitales. Las mayores barreras fueron la señalización inadecuada de rutas: 150 (97.4%) UAP y 20 (90.9%) hospitales; la carencia de soportes en los ba-ños: 152 (98.7%) UAP y 20 (90.9%) hospitales; la inaccesibilidad a personas en sillas de ruedas: 129 (83.8%) UAP y 9 (40.9%) hospitales. Discusión. Mejorar el acceso y la calidad de los ser-vicios de salud para las personas con discapacidad es impres-cindible para reducir las inequidades. Nuestro estudio indica que el diseño de los establecimientos de salud en Honduras supone una barrera para el acceso y calidad de salud de las personas con discapacidad. Se exhorta al Estado a regular y supervisar el diseño y construcción de edificios accesibles para todos, a fin de reducir las brechas en salud...(AU)

Influencing Factors of Transportation Costs Regarding Healthcare Service Utilization in Korea.

BACKGROUND: Transportation costs can be a barrier to healthcare services, especially for low-income, disabled, elderly, and geographically isolated populations. This study aimed to estimate the transportation costs of healthcare service utilization and related influencing factors in Korea in 2016. METHODS: Transportation costs were calculated using data from the 2016 Korea Health Panel Study. A total of 14,845 participants were included (males, 45.07%; females, 54.93%), among which 2,148 participants used inpatient and 14,787 used outpatient care services. Transportation costs were estimated by healthcare types, transportation modes, and all disease and injury groups that caused healthcare service utilization. The influencing factors of higher transportation costs were analyzed using multivariable regression analysis. RESULTS: In 2016, the average transportation costs were United States dollars (USD) 43.70 (purchasing power parity [PPP], USD 32.35) per year and USD 27.67 (PPP, USD 20.48) per visit for inpatient care; for outpatient case, costs were USD 41.43 (PPP, USD 30.67) per year and USD 2.09 (PPP, USD 1.55) per visit. Among disease and injury groups, those with neoplasms incurred the highest transportation costs of USD 9.73 (PPP, USD 7.20). Both inpatient and outpatient annual transportation costs were higher among severely disabled individuals (inpatient, +USD 44.71; outpatient, +USD 23.73) and rural residents (inpatient, +USD 20.40; outpatient, +USD 28.66). Transportation costs per healthcare visit were influenced by healthcare coverage and residential area. Sex, age, and income were influencing factors of higher transportation costs for outpatient care. CONCLUSION: Transportation cost burden was especially high among those with major non-communicable diseases (e.g., cancer) or living in rural areas, as well as elderly, severely disabled, and low-income populations. Thus, there is a need to address the socioeconomic disparities related to healthcare transportation costs in Korea by implementing targeted interventions in populations with restricted access to healthcare.

Gynecologic Care in Women With Down Syndrome: Findings From a National Registry.

OBJECTIVE: To estimate receipt of recommended gynecologic care, including cancer screening and menstrual care, among women with Down syndrome in the United States. METHODS: We conducted a retrospective cohort study of women participating in DS-Connect, the National Institute of Health's registry of women with Down syndrome. Using 2013-2019 survey data, we estimated the proportion of women receiving recommended age-appropriate well-woman care (Pap tests, mammogram, breast examination, pelvic examination) and compared receipt of gynecologic care to receipt of other preventive health care. We also estimated proportion receiving care for menstrual regulation. RESULTS: Of 70 participants with Down syndrome, 23% (95% CI 13-33) of women received all recommended gynecologic components of a well-woman examination. Forty-four percent (95% CI 32-56) of women aged 18 years and older reported ever having a gynecologic examination, and 26% (95% CI 15-37) reported ever having a Pap test. Of women aged 40 years or older, 50% (95% CI 22-78) had had a mammogram. Fifty-two percent (95% CI 41-65) had tried medication for menstrual regulation, and 89% (95% CI 81-96) received all recommended components of nongynecologic routine health care. CONCLUSION: Women with Down syndrome received gynecologic care, including cancer screening, at lower-than-recommended rates and at substantially lower rates than other forms of health care. Efforts to improve gynecologic care in this vulnerable population are needed.

Evaluación de necesidades de apoyo en universitarios con diversidad funcional de origen físico: un estudio de caso / Assessment of support needs in university students with Functional diversity of physical origin: a case study

Objetivo. Este estudio evaluó las necesidades de apoyo de estudiantes universitarios con diversidad funcional de origen físico en una Institución Educativa Superior. Se analizó, además, la percepción del docente y, en su conjunto, la correspondencia con las políticas de inclusión, tanto institucionales como de la nación. Método. Bajo el estudio de caso, se trabajó el enfoque cualitativo, con un diseño de teoría crítica. Se usó la entrevista en profundidad, el grupo focal y el análisis documental para la triangulación de la información. La muestra fue de casos-tipo y se definió por saturación de categorías. Se recurrió al criterio deductivoinductivo para el análisis de la información con el apoyo del software Atlas.ti. Resultados. Los participantes manifestaron presencia de barreras arquitectónicas, poca participación social en los diferentes escenarios que se organizan y necesidades de apoyo de tipo psicológico. Asimismo, deseos de formarse como profesionales. Conclusiones. Se reconoce la importancia que tiene para las instituciones de educación superior ser inclusivas para favorecer la mitigación de las necesidades que se presentan.

Objective: this study evaluated the support needs of university students with functional diversity of physical origin in a Higher Educational Institution. In addition, the perception teachers, and as a whole, the correspondence with inclusion policies, both institutional and national, were analyzed. Method: under the case study, the qualitative approach was worked out, with a critical theory design. The in-depth interview, the focus group, and the documentary analysis were used for the triangulation of the information. The sample was case-type and defined by saturation of categories. The deductive-inductive criterion was used to analyze the information with the support of the Atlas.ti software. Results: the participants manifested the presence of architectural barriers, little social participation in the different scenarios that are organized, and psychological support needs. Conclusions: the importance of higher education institutions to be inclusive to mitigate the needs is recognized.

Primary care provider adherence to reproductive healthcare guidelines in adolescents and young adults with disabilities: A retrospective matched cohort study1.

PURPOSE: Assessing provider adherence to preventative sexual and reproductive healthcare guidelines in adolescents and young adults (AYA) patients with physical and intellectual disabilities (PWD). METHODS: Records of PWD (N= 42) age 12-26 receiving health maintenance between 01/01/11-12/31/16 were reviewed for: (1) initiation and completion of human papilloma virus (HPV) vaccination series, (2) initiation and completion of meningococcal vaccination, (3) screening for human immunodeficiency virus (HIV), and documentation of (4) sexual, (5) menstrual, and (6) pregnancy histories. Unaffected age and gender-matched patients provided comparison data (Comparison Cohort, CC). RESULTS: The mean age of both groups was 17.3 years ± 3.8 and 40.5% were female. There was no significant difference between groups regarding the completion of HPV or meningococcal vaccine series. Among those 15+ years of age, 7.1% of PWD and 28.6% of CC were screened for HIV (p= 0.04). Sexual history was documented in 19.0% of PWD versus 73.8% of CC (p< 0.001). Among females, menstrual regularity was recorded in 11.8% of PWD versus 47.1% of CC (p= 0.02) and pregnancy history in 0.0% of PWD versus 29.4% of CC (p= 0.04). CONCLUSIONS: Adherence to sexual health guidelines was suboptimal, and lower among PWD. Vaccination rates did not differ between the two groups.

Estado actual de la atención sanitaria de personas con discapacidad auditiva y visual: una revisión breve / Health care of people with visual or hearing disabilities

Visual or hearing disabilities account for 20% of people reporting some sort of disability. We performed a literature review about the interaction that people with visual or hearing disabilities have with the health care system. We found that these people report a lower quality of life and have a higher frequency of physical and psychological ailments. They also have difficulties to obtain an adequate health care and report a paucity of trained professionals to take care of them.

Palliative care for patients with communication and cognitive difficulties.

OBJECTIVE: To help increase the confidence of both caregivers and clinicians in providing palliative care to adults with intellectual and developmental disabilities (IDD) using an easy-to-follow framework to improve and overcome barriers to effective palliative care in this population. QUALITY OF EVIDENCE: A literature review was conducted to explore recent best evidence to address these palliative care needs and to allow for a focused opportunity to consider the details of implementing clinical practice guidelines in the palliative care context. Evidence ranges from level I to level III. MAIN MESSAGE: Pain and psychological and emotional distress are important issues for individuals with IDD, as they can be difficult to assess and measure, and often present atypically, especially in those with limited communication skills. Further, little is known about end-of-life needs in the adult population with IDD, especially for those living in community residences. The conducted literature review of patient, caregiver, and clinician experiences exposed considerable barriers, including incorrect assumptions about patients' capacity to understand and discomfort of both caregivers and clinicians with open communication. This has resulted in exclusion of adults with IDD from their own care, which has proven harmful. Maximizing time in familiar surroundings and establishing trust and continuity are crucial. Sometimes trial and error with empiric use of comfort medications is necessary, but this can be mitigated with careful examination of distress patterns and judicious use of diagnostic testing. It is always best to integrate the palliative approach into the existing pattern of care. CONCLUSION: The validated tools and recommendations provided will assist with communication, symptom interpretation, treatment decisions, advanced care planning, addressing grief, and important considerations in end-of-life care.