ABSTRACT OBJECTIVE: To describe disability-related performance and inequality nationwide in Brazil, and the changes that took place between 2012 and 2019 after the introduction of Programme for Improving Primary Care Access and Quality (PMAQ). METHODS: We derived scores for disability-related care and accessibility of primary healthcare facilities from PMAQ indicators collected in round 1 (2011–2013), and round 3 (2015–2019). We assessed how scores changed after the introduction of PMAQ. We used census data on per capita income of local areas to examine the disability-specific care and accessibility scores by income group. We undertook ordinary least squares regressions to examine the association between PMAQ scores and per capita income of each local area across implementation rounds. RESULTS: Disability-related care scores were low in round 1 (18.8, 95%CI 18.3–19.3, out of a possible 100) and improved slightly by round 3 (22.5, 95%CI 22.0–23.1). Accessibility of primary healthcare facilities was also poor in round 1 (30.3, 95%CI 29.8–30.8) but doubled by round 3 (60.8, 95%CI 60.3–61.3). There were large socioeconomic inequalities in round 1, with both scores approximately twice as high in the richest compared to the poorest group. Inequalities weakened somewhat for accessibility scores by round 3. These trends were confirmed through regression analyses, controlling for other area characteristics. Disability-related and accessibility scores also varied strongly between states in both rounds. CONCLUSIONS: People with disabilities are being left behind by the Brazilian healthcare system, particularly in poor areas, which will challenge the achievement of universal health coverage.

Abstract This study describes findings from a case study conducted on access to healthcare for people with disabilities based on the perspective of primary care unit professionals and managers in three Brazilian municipalities, considering the dimensions of Availability and Accommodation and Appropriateness. A total of 16 primary care unit healthcare providers and managers were interviewed in Brasília - Federal District, Arcoverde - Pernambuco, and Santos - São Paulo. The Availability and Accommodation dimension showed architectural and urban barriers, lack of healthcare services, geographical concentration of infrastructure, and difficulty coordinating care. The Appropriateness dimension evinced a lack of healthcare provider training, which contributes to communication barriers between healthcare providers and people with disabilities. Interviewees also pointed to a fragile link between the health services that make up the care network. On the other hand, participants deemed professionals’ attitude and the bond built with people with disabilities as facilitators to accessing care. It was expected that the more developed areas within Brazil would have less barriers to access. However, this study showed challenges to accessing health in all settings, including the richest region of Brazil, its poorest region (the Northeast), and its capital.

Resumo Este artigo aborda o acesso das pessoas com deficiência às ações e serviços de saúde a partir da percepção de profissionais e gestores de unidades da atenção primária de três cidades do país, considerando as dimensões “Disponibilidade e acomodação” e “Adequação”. Trata-se de um estudo de caso, que entrevistou 16 profissionais e gestores de unidades de atenção primária nas cidades de Brasília (DF), Arcoverde (PE) e Santos (SP). Na dimensão da Disponibilidade e acomodação, observaram-se barreiras arquitetônicas e urbanísticas, escassez na oferta de serviços, concentração geográfica dos equipamentos sociais e dificuldade de coordenação do cuidado. Na dimensão Adequação, percebeu-se uma ausência institucional de formação, o que contribui para dificuldade de interlocução entre os profissionais de saúde e as pessoas com deficiência. Além disso, os entrevistados apontam para a fragilidade na comunicação entre os serviços de saúde que compõem a rede de atenção. Por outro lado, a postura dos profissionais e o vínculo construído com as pessoas com deficiência se apresentaram como facilitadores do acesso. Esperava-se que os espaços mais desenvolvidos apresentassem mais possibilidades de acesso, mas seja na capital do país, na região mais rica do Brasil ou no sertão nordestino, essa é ainda uma luta que precisa resistir.

ABSTRACT OBJECTIVE To investigate perspectives of people with disabilities in Brazil regarding the access to primary healthcare. METHODS In-depth interviews were conducted with 44 individuals with disabilities in Pernambuco, Distrito Federal, and São Paulo between March 2020 and November 2021. These interviews were transcribed, coded, and analysed thematically, using the Levesque framework to identify healthcare access barriers. RESULTS Participants expressed a solid understanding of their healthcare needs and existing obstacles. However, individuals with hearing and visual impairments experience challenges because of communication barriers. In Pernambuco, the Community Health Agent was often the initial point of contact for primary care services. Public transportation lacked accessibility, from buses to driver attitudes, posing difficulties for people with disabilities. More accessible transportation and improved urban infrastructure could enhance service access. High medication costs were reported due to limited healthcare unit availability. Communication accessibility issues, inadequate audio-visual resources and equipment were also identified as barriers. Attitudinal barriers among healthcare professionals and subpar home visit services further hinder access. CONCLUSION To address these challenges and improve the well-being of individuals with disabilities in Brazil, comprehensive action is essential. This includes leadership, governance, and resource allocation reforms to meet healthcare needs. Initiatives like disability-focused training for service providers, enhanced transportation options, improved information accessibility, and increased support from community healthcare workers can collectively enhance the lives of people with disabilities.

ABSTRACT OBJECTIVE To investigate perspectives of people with disabilities in Brazil regarding the access to primary healthcare. METHODS In-depth interviews were conducted with 44 individuals with disabilities in Pernambuco, Distrito Federal, and São Paulo between March 2020 and November 2021. These interviews were transcribed, coded, and analysed thematically, using the Levesque framework to identify healthcare access barriers. RESULTS Participants expressed a solid understanding of their healthcare needs and existing obstacles. However, individuals with hearing and visual impairments experience challenges because of communication barriers. In Pernambuco, the Community Health Agent was often the initial point of contact for primary care services. Public transportation lacked accessibility, from buses to driver attitudes, posing difficulties for people with disabilities. More accessible transportation and improved urban infrastructure could enhance service access. High medication costs were reported due to limited healthcare unit availability. Communication accessibility issues, inadequate audio-visual resources and equipment were also identified as barriers. Attitudinal barriers among healthcare professionals and subpar home visit services further hinder access. CONCLUSION To address these challenges and improve the well-being of individuals with disabilities in Brazil, comprehensive action is essential. This includes leadership, governance, and resource allocation reforms to meet healthcare needs. Initiatives like disability-focused training for service providers, enhanced transportation options, improved information accessibility, and increased support from community healthcare workers can collectively enhance the lives of people with disabilities. Indepth depth 4 Pernambuco Federal 202 2021 transcribed coded thematically obstacles However attitudes availability issues audiovisual audio wellbeing well being essential leadership governance disabilityfocused disability focused providers options 20 2

ABSTRACT OBJECTIVE: To describe disability-related performance and inequality nationwide in Brazil, and the changes that took place between 2012 and 2019 after the introduction of Programme for Improving Primary Care Access and Quality (PMAQ). METHODS: We derived scores for disability-related care and accessibility of primary healthcare facilities from PMAQ indicators collected in round 1 (2011–2013), and round 3 (2015–2019). We assessed how scores changed after the introduction of PMAQ. We used census data on per capita income of local areas to examine the disability-specific care and accessibility scores by income group. We undertook ordinary least squares regressions to examine the association between PMAQ scores and per capita income of each local area across implementation rounds. RESULTS: Disability-related care scores were low in round 1 (18.8, 95%CI 18.3–19.3, out of a possible 100) and improved slightly by round 3 (22.5, 95%CI 22.0–23.1). Accessibility of primary healthcare facilities was also poor in round 1 (30.3, 95%CI 29.8–30.8) but doubled by round 3 (60.8, 95%CI 60.3–61.3). There were large socioeconomic inequalities in round 1, with both scores approximately twice as high in the richest compared to the poorest group. Inequalities weakened somewhat for accessibility scores by round 3. These trends were confirmed through regression analyses, controlling for other area characteristics. Disability-related and accessibility scores also varied strongly between states in both rounds. CONCLUSIONS: People with disabilities are being left behind by the Brazilian healthcare system, particularly in poor areas, which will challenge the achievement of universal health coverage. OBJECTIVE disabilityrelated disability related Brazil 201 . (PMAQ) METHODS 2011–2013, 20112013 2011–2013 , 2011 2013 (2011–2013) 2015–2019. 20152019 2015–2019 2015 (2015–2019) disabilityspecific specific group rounds RESULTS Disabilityrelated Disability 18.8, 188 18 8 (18.8 95CI CI 95 183193 19 18.3–19.3 100 22.5, 225 22 5 (22.5 22.0–23.1. 220231 22.0–23.1 0 23 22.0–23.1) 30.3, 303 30 (30.3 29.8–30.8 298308 29 60.8, 608 60 (60.8 60.3–61.3. 603613 60.3–61.3 61 60.3–61.3) analyses characteristics CONCLUSIONS system coverage 20 (PMAQ 2011201 2011–201 (2011–2013 2015201 2015–201 (2015–2019 18.8 (18. 9 18319 18.3–19. 10 22.5 2 (22. 22023 22.0–23. 30.3 (30. 29.8–30. 29830 60.8 6 (60. 60361 60.3–61. 201120 2011–20 (2011–201 201520 2015–20 (2015–201 18. (18 1831 18.3–19 22. (22 2202 22.0–23 30. (30 29.8–30 2983 60. (60 6036 60.3–61 20112 2011–2 (2011–20 20152 2015–2 (2015–20 (1 183 18.3–1 (2 220 22.0–2 (3 29.8–3 298 (6 603 60.3–6 2011– (2011–2 2015– (2015–2 ( 18.3– 22.0– 29.8– 60.3– (2011– (2015– 18.3 22.0 29.8 60.3 (2011 (2015 29. (201 (20

Resumo Este artigo aborda o acesso das pessoas com deficiência às ações e serviços de saúde a partir da percepção de profissionais e gestores de unidades da atenção primária de três cidades do país, considerando as dimensões “Disponibilidade e acomodação” e “Adequação”. Trata-se de um estudo de caso, que entrevistou 16 profissionais e gestores de unidades de atenção primária nas cidades de Brasília (DF), Arcoverde (PE) e Santos (SP). Na dimensão da Disponibilidade e acomodação, observaram-se barreiras arquitetônicas e urbanísticas, escassez na oferta de serviços, concentração geográfica dos equipamentos sociais e dificuldade de coordenação do cuidado. Na dimensão Adequação, percebeu-se uma ausência institucional de formação, o que contribui para dificuldade de interlocução entre os profissionais de saúde e as pessoas com deficiência. Além disso, os entrevistados apontam para a fragilidade na comunicação entre os serviços de saúde que compõem a rede de atenção. Por outro lado, a postura dos profissionais e o vínculo construído com as pessoas com deficiência se apresentaram como facilitadores do acesso. Esperava-se que os espaços mais desenvolvidos apresentassem mais possibilidades de acesso, mas seja na capital do país, na região mais rica do Brasil ou no sertão nordestino, essa é ainda uma luta que precisa resistir. país acomodação Adequação. Adequação . “Adequação” Tratase Trata caso 1 DF, DF , (DF) PE (PE SP. SP (SP) observaramse observaram urbanísticas cuidado percebeuse percebeu formação disso lado Esperavase Esperava nordestino resistir “Adequação (DF (SP

Abstract This study describes findings from a case study conducted on access to healthcare for people with disabilities based on the perspective of primary care unit professionals and managers in three Brazilian municipalities, considering the dimensions of Availability and Accommodation and Appropriateness. A total of 16 primary care unit healthcare providers and managers were interviewed in Brasília - Federal District, Arcoverde - Pernambuco, and Santos - São Paulo. The Availability and Accommodation dimension showed architectural and urban barriers, lack of healthcare services, geographical concentration of infrastructure, and difficulty coordinating care. The Appropriateness dimension evinced a lack of healthcare provider training, which contributes to communication barriers between healthcare providers and people with disabilities. Interviewees also pointed to a fragile link between the health services that make up the care network. On the other hand, participants deemed professionals’ attitude and the bond built with people with disabilities as facilitators to accessing care. It was expected that the more developed areas within Brazil would have less barriers to access. However, this study showed challenges to accessing health in all settings, including the richest region of Brazil, its poorest region (the Northeast), and its capital. municipalities 1 District Pernambuco Paulo infrastructure training network hand However settings Northeast, Northeast , Northeast) capital

Resumen: El objetivo fue identificar los relatos de síntomas de depresión, ansiedad y estrés entre cuidadores de niños sin discapacidad visual, con baja visión y con ceguera y su relación con el grado de apoyo social, emocional, material y afectivo. Estudio transversal y multicéntrico realizado en la ciudad de Río de Janeiro, Brasil, entre el 2019 y el 2020. Se aplicó un cuestionario para obtener datos sociodemográficos y económicos del cuidador. Se utilizaron la Escala de Apoyo Social (The Medical Outcomes Study Social Support Scale - MOS-SSS) y Escala de Depresión, Ansiedad y Estrés (The Depression, Anxiety, and Stress Scale - DASS-21). Al comparar las escalas, se utilizaron pruebas para comparaciones múltiples. Se estimó la razón de prevalencia de síntomas de depresión, ansiedad y estrés. Del total de cuidadores (N = 355), más del 90% eran mujeres madres y la mayor proporción de cuidadores sin escolaridad o con primaria incompleta y con menor ingreso mensual promedio fueron los de niños con discapacidad visual. La mayoría de los cuidadores de niños con ceguera reportó síntomas de depresión, ansiedad y estrés, respectivamente, 66,7%, 73,3% y 80%, mismo comportamiento observado en el grupo de cuidadores de niños con baja visión. Al evaluar la relación entre los resultados de las escalas MOS-SSS y DASS-21, entre los cuidadores de niños sin discapacidad o con menor compromiso visual, se observó mayor apoyo y menores puntajes de relatos de depresión, ansiedad y estrés. Entre los cuidadores de niños ciegos, la mayor prevalencia de tales relatos no dependió del apoyo recibido. Los resultados indican la necesidad de una Política de Cuidado con mecanismos para proteger la salud mental de los cuidadores de niños con discapacidad visual. Resumen depresión visual social emocional afectivo Janeiro Brasil 201 2020 cuidador The MOSSSS MOS SSS Depresión Depression Anxiety DASS21. DASS21 DASS 21 . DASS-21) múltiples N 355, 355 , 355) 90 respectivamente 667 66 7 66,7% 733 73 3 73,3 80 80% DASS21, 21, DASS-21 ciegos recibido 20 202 DASS2 2 35 9 6 66,7 73, 8 DASS-2 66, DASS-

Resumo: O objetivo foi identificar os relatos de sintomas de depressão, ansiedade e estresse entre cuidadores de crianças sem deficiência visual, com baixa visão e com cegueira e sua relação com o grau de apoio social, emocional, material e afetivo. Estudo transversal e multicêntrico, realizado no Município do Rio de Janeiro, Brasil, entre 2019 e 2020. Aplicou-se um questionário para obter dados sociodemográficos e econômicos do cuidador. Foram utilizadas a Escala de Apoio Social (The Medical Outcomes Study Social Support Scale - MOS-SSS) e a Escala de Depressão, Ansiedade e Estresse (The Depression, Anxiety, and Stress Scale - DASS-21). Na comparação entre as escalas, foram utilizados testes para comparações múltiplas. Estimou-se a razão de prevalência de sintomas de depressão, ansiedade e estresse. Do total de cuidadores (N = 355), mais de 90% eram mulheres-mães e a maior proporção de cuidadores sem instrução ou Ensino Fundamental incompleto e com menor renda média mensal foi daqueles de crianças com deficiência visual. A maioria dos cuidadores de crianças com cegueira relatou sintomas de depressão, ansiedade e estresse (respectivamente, 66,7%, 73,3% e 80%), mesmo comportamento observado no grupo de cuidadores de crianças com baixa visão. Na avaliação da relação entre os resultados das escalas MOS-SSS e DASS-21, entre os cuidadores de crianças sem deficiência ou com menor comprometimento visual, observou-se maiores apoios e menores escores de relatos de depressão, ansiedade e estresse. Entre os cuidadores de crianças cegas, as maiores prevalências não dependeram dos apoios recebidos. Os resultados indicam a necessidade de uma política de cuidado com mecanismos de proteção à saúde mental dos cuidadores de crianças com deficiência visual. Resumo depressão visual social emocional afetivo multicêntrico Janeiro Brasil 201 2020 Aplicouse Aplicou se cuidador The MOSSSS MOS SSS Depressão Depression Anxiety DASS21. DASS21 DASS 21 . DASS-21) múltiplas Estimouse Estimou N 355, 355 , 355) 90 mulheresmães mulheres mães respectivamente, respectivamente (respectivamente 667 66 7 66,7% 733 73 3 73,3 80%, 80 80% 80%) DASS21, 21, DASS-21 observouse observou cegas recebidos 20 202 DASS2 2 35 9 6 66,7 73, 8 DASS-2 66, DASS-

Abstract: We aimed to identify the reports of symptoms of depression, anxiety, and stress among caregivers of children without visual impairment, with low vision, and with blindness and their relationship with the degree of social, emotional, material, and affective support. This cross-sectional and multicenter study was conducted in the municipality of Rio de Janeiro, Brazil, from 2019 to 2020. A questionnaire was applied to obtain caregivers’ sociodemographic and economic data. The Medical Outcomes Study Social Support Scale (MOS-SSS) and The Depression, Anxiety, and Stress Scale (DASS-21) were used. Tests were used for multiple comparisons of these scales. The prevalence ratio of symptoms of depression, anxiety, and stress was estimated. Of all caregivers (N = 355), more than 90% were women-mothers. Caregivers of children with visual impairment show the highest proportion of no schooling, incomplete elementary education, or lower average monthly income. Most caregivers of children with blindness reported symptoms of depression, anxiety, and stress (66.7%, 73.3%, and 80%, respectively) as did those of children with low vision. The evaluation of the relationship between MOS-SSS and DASS-21 results shows greater support and lower scores of reports of depression, anxiety, and stress for caregivers of children without disabilities or with less visual impairment. For caregivers of blind children, the highest prevalence of such reports was independent of the received support. Results indicate the need for a care policy with mechanisms to protect the mental health of caregivers of visually impaired children. Abstract depression anxiety vision social emotional material crosssectional cross sectional Janeiro Brazil 201 2020 data MOSSSS MOS SSS (MOS-SSS Depression Anxiety DASS21 DASS 21 (DASS-21 scales estimated N 355, 355 , 355) 90 womenmothers. womenmothers women mothers. mothers women-mothers schooling education income 66.7%, 667 66 7 (66.7% 733 73 3 73.3% 80 80% respectively DASS-2 20 202 DASS2 2 (DASS-2 35 9 66.7% 6 (66.7 73.3 8 DASS- (DASS- 66.7 (66. 73. (DASS 66. (66 (6 (

Resumen: El objetivo fue identificar los relatos de síntomas de depresión, ansiedad y estrés entre cuidadores de niños sin discapacidad visual, con baja visión y con ceguera y su relación con el grado de apoyo social, emocional, material y afectivo. Estudio transversal y multicéntrico realizado en la ciudad de Río de Janeiro, Brasil, entre el 2019 y el 2020. Se aplicó un cuestionario para obtener datos sociodemográficos y económicos del cuidador. Se utilizaron la Escala de Apoyo Social (The Medical Outcomes Study Social Support Scale - MOS-SSS) y Escala de Depresión, Ansiedad y Estrés (The Depression, Anxiety, and Stress Scale - DASS-21). Al comparar las escalas, se utilizaron pruebas para comparaciones múltiples. Se estimó la razón de prevalencia de síntomas de depresión, ansiedad y estrés. Del total de cuidadores (N = 355), más del 90% eran mujeres madres y la mayor proporción de cuidadores sin escolaridad o con primaria incompleta y con menor ingreso mensual promedio fueron los de niños con discapacidad visual. La mayoría de los cuidadores de niños con ceguera reportó síntomas de depresión, ansiedad y estrés, respectivamente, 66,7%, 73,3% y 80%, mismo comportamiento observado en el grupo de cuidadores de niños con baja visión. Al evaluar la relación entre los resultados de las escalas MOS-SSS y DASS-21, entre los cuidadores de niños sin discapacidad o con menor compromiso visual, se observó mayor apoyo y menores puntajes de relatos de depresión, ansiedad y estrés. Entre los cuidadores de niños ciegos, la mayor prevalencia de tales relatos no dependió del apoyo recibido. Los resultados indican la necesidad de una Política de Cuidado con mecanismos para proteger la salud mental de los cuidadores de niños con discapacidad visual.

Abstract: We aimed to identify the reports of symptoms of depression, anxiety, and stress among caregivers of children without visual impairment, with low vision, and with blindness and their relationship with the degree of social, emotional, material, and affective support. This cross-sectional and multicenter study was conducted in the municipality of Rio de Janeiro, Brazil, from 2019 to 2020. A questionnaire was applied to obtain caregivers’ sociodemographic and economic data. The Medical Outcomes Study Social Support Scale (MOS-SSS) and The Depression, Anxiety, and Stress Scale (DASS-21) were used. Tests were used for multiple comparisons of these scales. The prevalence ratio of symptoms of depression, anxiety, and stress was estimated. Of all caregivers (N = 355), more than 90% were women-mothers. Caregivers of children with visual impairment show the highest proportion of no schooling, incomplete elementary education, or lower average monthly income. Most caregivers of children with blindness reported symptoms of depression, anxiety, and stress (66.7%, 73.3%, and 80%, respectively) as did those of children with low vision. The evaluation of the relationship between MOS-SSS and DASS-21 results shows greater support and lower scores of reports of depression, anxiety, and stress for caregivers of children without disabilities or with less visual impairment. For caregivers of blind children, the highest prevalence of such reports was independent of the received support. Results indicate the need for a care policy with mechanisms to protect the mental health of caregivers of visually impaired children.

Resumo: O objetivo foi identificar os relatos de sintomas de depressão, ansiedade e estresse entre cuidadores de crianças sem deficiência visual, com baixa visão e com cegueira e sua relação com o grau de apoio social, emocional, material e afetivo. Estudo transversal e multicêntrico, realizado no Município do Rio de Janeiro, Brasil, entre 2019 e 2020. Aplicou-se um questionário para obter dados sociodemográficos e econômicos do cuidador. Foram utilizadas a Escala de Apoio Social (The Medical Outcomes Study Social Support Scale - MOS-SSS) e a Escala de Depressão, Ansiedade e Estresse (The Depression, Anxiety, and Stress Scale - DASS-21). Na comparação entre as escalas, foram utilizados testes para comparações múltiplas. Estimou-se a razão de prevalência de sintomas de depressão, ansiedade e estresse. Do total de cuidadores (N = 355), mais de 90% eram mulheres-mães e a maior proporção de cuidadores sem instrução ou Ensino Fundamental incompleto e com menor renda média mensal foi daqueles de crianças com deficiência visual. A maioria dos cuidadores de crianças com cegueira relatou sintomas de depressão, ansiedade e estresse (respectivamente, 66,7%, 73,3% e 80%), mesmo comportamento observado no grupo de cuidadores de crianças com baixa visão. Na avaliação da relação entre os resultados das escalas MOS-SSS e DASS-21, entre os cuidadores de crianças sem deficiência ou com menor comprometimento visual, observou-se maiores apoios e menores escores de relatos de depressão, ansiedade e estresse. Entre os cuidadores de crianças cegas, as maiores prevalências não dependeram dos apoios recebidos. Os resultados indicam a necessidade de uma política de cuidado com mecanismos de proteção à saúde mental dos cuidadores de crianças com deficiência visual.

O artigo adota um referencial socioantropológico para explorar os estigmas subjacentes às interações com crianças que nascem com a síndrome congênita do vírus Zika provocada pela epidemia de Zika em duas cidades brasileiras. Foram realizadas entrevistas semiestruturadas com os pais e outros familiares. Os autores refletem sobre a busca de sentido ao ter um filho com marcas corporais inesperadas, sofrimento moral, capacitismo, o fardo pesado dos cuidados e a necessidade de redes de apoio. Concluem que políticas públicas, principalmente sociais (saúde, educação e assistência social) são essenciais para produzir mecanismos compensatórios, reconhecimento e inclusão social dessas crianças e de suas famílias.

This article uses a socio-anthropological framework to explore the stigmas around interactions with children born with congenital Zika syndrome caused by the Zika virus epidemic in two Brazilian municipalities. Semi-structured interviews were conducted with parents and other relatives. We reflected on the search for meaning when having a baby with unexpected body marks, the moral suffering, the societal ableism, the burden of care, and the need for support networks. We concluded that public policies, especially social policies (health, education, and social assistance), are essential for compensatory mechanisms, recognition, and social inclusion of these children and their families.

Este artículo adopta un marco socioantropológico para investigar los estigmas subyacentes a las interacciones con niños, nacidos con el síndrome congénito del virus Zika, causado por la epidemia de Zika en dos ciudades brasileñas. Se realizaron entrevistas semiestructuradas con padres y otros parientes. Reflejamos en la investigación el significado de tener un bebé con marcas corporales inesperadas, sufrimiento moral, razón de la discapacidad social y carga de cuidado, así como la necesidad de redes de apoyo. Concluimos que las políticas públicas, especialmente las políticas sociales (salud, educación, y asistencia social), son cruciales produciendo mecanismos compensatorios, reconocimiento e inclusión social de estos niños y sus familias.

O artigo adota um referencial socioantropológico para explorar os estigmas subjacentes às interações com crianças que nascem com a síndrome congênita do vírus Zika provocada pela epidemia de Zika em duas cidades brasileiras. Foram realizadas entrevistas semiestruturadas com os pais e outros familiares. Os autores refletem sobre a busca de sentido ao ter um filho com marcas corporais inesperadas, sofrimento moral, capacitismo, o fardo pesado dos cuidados e a necessidade de redes de apoio. Concluem que políticas públicas, principalmente sociais (saúde, educação e assistência social) são essenciais para produzir mecanismos compensatórios, reconhecimento e inclusão social dessas crianças e de suas famílias.

This article uses a socio-anthropological framework to explore the stigmas around interactions with children born with congenital Zika syndrome caused by the Zika virus epidemic in two Brazilian municipalities. Semi-structured interviews were conducted with parents and other relatives. We reflected on the search for meaning when having a baby with unexpected body marks, the moral suffering, the societal ableism, the burden of care, and the need for support networks. We concluded that public policies, especially social policies (health, education, and social assistance), are essential for compensatory mechanisms, recognition, and social inclusion of these children and their families.

Este artículo adopta un marco socioantropológico para investigar los estigmas subyacentes a las interacciones con niños, nacidos con el síndrome congénito del virus Zika, causado por la epidemia de Zika en dos ciudades brasileñas. Se realizaron entrevistas semiestructuradas con padres y otros parientes. Reflejamos en la investigación el significado de tener un bebé con marcas corporales inesperadas, sufrimiento moral, razón de la discapacidad social y carga de cuidado, así como la necesidad de redes de apoyo. Concluimos que las políticas públicas, especialmente las políticas sociales (salud, educación, y asistencia social), son cruciales produciendo mecanismos compensatorios, reconocimiento e inclusión social de estos niños y sus familias.

BACKGROUND: On average, people with disabilities have greater healthcare needs, yet face a range of barriers in accessing care. OBJECTIVES: Our objectives were to explore the experiences of people with disabilities in accessing care and identify opportunities for the health system to be designed for inclusion in Zimbabwe. METHODS: In-depth qualitative interviews were conducted between May and June 2021 with 24 people with disabilities (identified through purposive sampling) and with 10 key informants from local and national health authorities (identified through expert recommendations). Interviews explored the experience of accessing healthcare prior to the coronavirus disease 2019 (COVID-19) pandemic. Interviews were transcribed, coded and thematically analysed. We used the disability-inclusive health 'Missing Billion' framework to map and inform barriers to inclusive healthcare and disparities in outcomes faced by people with disabilities. RESULTS: People with disabilities experienced difficulties accessing health services in Zimbabwe prior to COVID-19. These experiences were shaped by health literacy, self-stigma and affordability of services, which limited demand. Supply of health services was constrained by the perceived poor capacity of health workers to treat people with disabilities and discrimination. Inclusion was facilitated by clinic staff support of people with disabilities' access to medication through referral to mission hospitals and private clinics, and the lobbying of organisations of people with disabilities. CONCLUSION: Strategies to promote disability inclusion in healthcare include meaningfully engaging people with disabilities, investing in organisations of people with disabilities, protecting funding for disability inclusion, collecting and analysing disability-disaggregated data and strengthening a twin-track approach to health service provision.

BACKGROUND: People with disabilities are at higher risk of adverse coronavirus disease 2019 (COVID-19) outcomes. Additionally, measures to mitigate COVID-19 transmission have impacted health service provision and access, which may particularly disadvantage people with disabilities OBJECTIVES: To explore the perspectives and experiences of people with disabilities in accessing health services in Zimbabwe during the pandemic, to identify perceived challenges and facilitators to inclusive health and key actions to improve accessibility METHODS: We used in-depth interviews with 24 people with disabilities (identified through purposive sampling) and with 10 key informants (from expert recommendation) to explore the impact of COVID-19 on access to health care. Interviews were transcribed, coded and thematically analysed. We used the disability-inclusive health 'Missing Billion' framework to map and inform barriers to inclusive health care during COVID-19 and disparities in outcomes faced by people with disabilities RESULTS: People with disabilities demonstrated good awareness of COVID-19 mitigation strategies, but faced difficulties accessing COVID-19 information and health services. Challenges to the implementation of COVID-19 guidelines related to a person's functional impairment and financial ability to do so. A key supply-side constraint was the perceived de-prioritisation of rehabilitation services. Further restrictions on access to health services and rehabilitation decreased an individual's functional ability and exacerbated pre-existing conditions CONCLUSION: The immediate health and financial impacts of the COVID-19 pandemic on people with disabilities in Zimbabwe were severe. Government departments should include people with disabilities in all communications and activities related to the pandemic through a twin-track approach, meaning inclusion in mainstream activities and targeting with specific interventions where necessary

Em 2015, houve um aumento de casos de más-formações congênitas entre recém-nascidos no Brasil associado ao vírus Zika, com repercussões sociais e econômicas para as famílias. O objetivo deste estudo foi estimar a prevalência de gasto catastrófico para famílias de crianças com síndrome congênita do vírus Zika (SCZ) grave, leve/moderada em comparação com famílias de crianças sem diagnóstico de SCZ, no Estado do Rio de Janeiro. O termo gasto catastrófico ocorre quando o gasto excede determinada proporção da renda da família devido à doença. Os cuidadores de crianças com SCZ grave eram mais jovens, com menor escolaridade e renda. A prevalência de gasto catastrófico foi maior em famílias de crianças com SCZ. Dentre os cuidadores de crianças com SCZ grave, identificou-se que a prevalência de gasto catastrófico foi mais elevada entre aqueles que apresentaram graus de depressão, ansiedade e estresse graves ou muito graves. O baixo apoio social entre os cuidadores também foi determinante para o aumento da prevalência do gasto. A carga que incide sobre os cuidadores de crianças com SCZ grave potencializa uma situação de vulnerabilidade que demanda a amplificação do acesso aos mecanismos de proteção financeira e social, através da articulação de diferentes políticas que sejam capazes de alcançar efetivamente esse grupo.

In 2015, there was an increase in cases of congenital malformations in newborns in Brazil, associated with maternal Zika virus infection, having serious social and economic repercussions for the families. The study aimed to estimate the prevalence of catastrophic expenditure by families of children with severe or mild/moderate congenital Zika syndrome (CZS) in comparison to families of children without a diagnosis of CZS in the state of Rio de Janeiro. Catastrophic expenditure occurs when spending exceeds a given proportion of the family income due to a disease. Family caregivers of children with severe CZS were younger and had less schooling and lower income. Prevalence of catastrophic expenditure was higher in families of children with CZS. Among caregivers of children with severe CZS, the prevalence of catastrophic expenditure was higher in those with severe or very severe depression, anxiety, and stress. Low social support among caregivers was also a determinant factor for increased prevalence of catastrophic expenditure. The burden on caregivers of children with severe CZS exacerbates a situation of vulnerability that requires the expansion of mechanisms for financial and social protection, through linkage of various policies capable of effectively reaching this group.

En 2015, hubo un aumento de casos de malformaciones congénitas entre recién nacidos en Brasil, asociado al virus zika con repercusiones sociales y económicas para las familias. El objetivo de este estudio fue estimar la prevalencia de gasto catastrófico para las familias de niños con síndrome congénito del virus Zika (SCZ) grave, leve/moderado, en comparación con familias de niños sin diagnóstico de SCZ, en el estado de Río de Janeiro. El término gasto catastrófico se usa cuando el gasto excede una determinada proporción de la renta de la familia, debido a la enfermedad. Los cuidadores de niños con SCZ grave eran más jóvenes, con menor escolaridad y renta. La prevalencia de gasto catastrófico fue mayor en familias de niños con SCZ. Entre los cuidadores de niños con SCZ grave se identificó que la prevalencia de gasto catastrófico fue más elevada entre aquellos que presentaron grados de depresión, ansiedad y estrés grave o muy grave. El bajo apoyo social entre los cuidadores también fue determinante para el aumento de la prevalencia del gasto. La carga que incide sobre los cuidadores de niños con SCZ grave potencia una situación de vulnerabilidad que demanda la ampliación del acceso a los mecanismos de protección financiera y social, a través de la coordinación de diferentes políticas que sean capaces de alcanzar efectivamente a ese grupo.

Em 2015, houve um aumento de casos de más-formações congênitas entre recém-nascidos no Brasil associado ao vírus Zika, com repercussões sociais e econômicas para as famílias. O objetivo deste estudo foi estimar a prevalência de gasto catastrófico para famílias de crianças com síndrome congênita do vírus Zika (SCZ) grave, leve/moderada em comparação com famílias de crianças sem diagnóstico de SCZ, no Estado do Rio de Janeiro. O termo gasto catastrófico ocorre quando o gasto excede determinada proporção da renda da família devido à doença. Os cuidadores de crianças com SCZ grave eram mais jovens, com menor escolaridade e renda. A prevalência de gasto catastrófico foi maior em famílias de crianças com SCZ. Dentre os cuidadores de crianças com SCZ grave, identificou-se que a prevalência de gasto catastrófico foi mais elevada entre aqueles que apresentaram graus de depressão, ansiedade e estresse graves ou muito graves. O baixo apoio social entre os cuidadores também foi determinante para o aumento da prevalência do gasto. A carga que incide sobre os cuidadores de crianças com SCZ grave potencializa uma situação de vulnerabilidade que demanda a amplificação do acesso aos mecanismos de proteção financeira e social, através da articulação de diferentes políticas que sejam capazes de alcançar efetivamente esse grupo.

In 2015, there was an increase in cases of congenital malformations in newborns in Brazil, associated with maternal Zika virus infection, having serious social and economic repercussions for the families. The study aimed to estimate the prevalence of catastrophic expenditure by families of children with severe or mild/moderate congenital Zika syndrome (CZS) in comparison to families of children without a diagnosis of CZS in the state of Rio de Janeiro. Catastrophic expenditure occurs when spending exceeds a given proportion of the family income due to a disease. Family caregivers of children with severe CZS were younger and had less schooling and lower income. Prevalence of catastrophic expenditure was higher in families of children with CZS. Among caregivers of children with severe CZS, the prevalence of catastrophic expenditure was higher in those with severe or very severe depression, anxiety, and stress. Low social support among caregivers was also a determinant factor for increased prevalence of catastrophic expenditure. The burden on caregivers of children with severe CZS exacerbates a situation of vulnerability that requires the expansion of mechanisms for financial and social protection, through linkage of various policies capable of effectively reaching this group.

En 2015, hubo un aumento de casos de malformaciones congénitas entre recién nacidos en Brasil, asociado al virus zika con repercusiones sociales y económicas para las familias. El objetivo de este estudio fue estimar la prevalencia de gasto catastrófico para las familias de niños con síndrome congénito del virus Zika (SCZ) grave, leve/moderado, en comparación con familias de niños sin diagnóstico de SCZ, en el estado de Río de Janeiro. El término gasto catastrófico se usa cuando el gasto excede una determinada proporción de la renta de la familia, debido a la enfermedad. Los cuidadores de niños con SCZ grave eran más jóvenes, con menor escolaridad y renta. La prevalencia de gasto catastrófico fue mayor en familias de niños con SCZ. Entre los cuidadores de niños con SCZ grave se identificó que la prevalencia de gasto catastrófico fue más elevada entre aquellos que presentaron grados de depresión, ansiedad y estrés grave o muy grave. El bajo apoyo social entre los cuidadores también fue determinante para el aumento de la prevalencia del gasto. La carga que incide sobre los cuidadores de niños con SCZ grave potencia una situación de vulnerabilidad que demanda la ampliación del acceso a los mecanismos de protección financiera y social, a través de la coordinación de diferentes políticas que sean capaces de alcanzar efectivamente a ese grupo.