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The purpose of this article is to analyse the circumstances in which the National Health Policy for Persons with Disabilities (PNSPCD) came into place in 2002 and the factors supporting or impeding its implementation from 2002 to 2018. The analysis was based on the Comprehensive Policy Analysis Model proposed by Walt and Gilson and focussed on understanding the context, process, content and actors involved in the formulation and implementation of the Policy. Data were obtained from two sources: document analysis of the key relevant documents and seven key informant interviews. Content analysis was undertaken using the Condensation of Meanings technique. The research demonstrates that the development and implementation of PNSPCD is marked by advances and retreats, determined, above all, by national and international macro-political decisions. The policy was formulated during Fernando Henrique's governments, under pressure from social movements and the international agenda and constituted a breakthrough for the rights of persons with disabilities. However, progress on implementation only took place under subsequent centre-left governments with the establishment of a care network for people with disabilities and a defined specific budget. These developments resulted from the mobilization of social movements, the ratification of the United Nations Convention on the rights of people with disabilities and the adherence of these governments to the human rights agenda. The coming to power of ultra-right governments triggered fiscal austerity, a setback in the implementation of the care network and a weakening in the content of various social policies related to the care of people with disabilities. During this era, the political approach changed, with the attempt to evade the role of the State, and the perspective of guaranteeing social rights. Undoubtedly, the neoliberal offensive on social policies, especially the Unified Health System, is the main obstacle to the effective implementation of the PNPCD in Brazil.

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People with disabilities have greater need for healthcare on average, but often face barriers when accessing these services. The Brazilian government launched the National Health Policy for People with Disabilities (PNSPD) in 2002 to address this inequality. PNSPD has six areas of focus: quality of life, impairment prevention, comprehensive health care, organization and functioning of health services, information mechanisms, and training of human resources. The aim of this article was to undertake a scoping review to assess the evidence on the experience of people with disabilities in Brazil with respect to the six themes of the PNSPD. The scoping review included articles published between 2002 and 2019, from four electronic databases: PUBMED/MEDLINE, LILACS, Science Direct, and Scielo. In total, 8076 articles were identified, and after review of titles, abstracts, and full texts by two independent reviewers, 98 were deemed eligible for inclusion. The evidence was relatively limited in availability and scope. However, it consistently showed large gaps in delivery of healthcare to people with disabilities across the six dimensions considered. There was lack of actions aimed at promoting quality of life; insufficient professional training about disability; little evidence on the health profile of people with disabilities; large gaps in the availability of care due to widespread physical, informational, and attitudinal barriers; and poor distribution of the supply and integration of services. In conclusion, the policy framework in Brazil is supportive of the inclusion of people with disabilities in health services; however, large inequalities remain due to poor implementation of the policy into practice.

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Background: This study explores the acceptability and feasibility of the use of two different Participatory Visual Methods (Participatory Video and Digital Storytelling) in gathering information on the experiences and perspectives of carers of children with Congenital Zika Syndrome within Colombia. Methods: Participatory Video was used to assess the impact of the Juntos parent-support intervention in the lives of carers, and Digital Storytelling was used to explore the healthcare access for these children. In-depth interviews were conducted to probe participants on their views of these methods. Results: One Participatory Video was produced and four Digital Stories. Of the initial eight caregivers who took part in the Participatory Video process, four completed both the Digital Storytelling process and an in-depth interview about their experiences. The main factors shaping participants' experiences related to the skills learned in making the videos, the feeling of collectiveness and the control over the processes. Conclusions: Women with children with Congenital Zika Syndrome have reported feeling marginalised and misunderstood in daily life. This case study found that Participatory Visual Methods is acceptable and feasible. Moreover, these approaches can support groups in different aspects, such as providing a space to share their stories creatively, hear others in similar situations as them and increase the feeling of community.

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The congenital Zika syndrome (CZS) epidemic in Brazil turned the spotlight on many other factors beyond illness, such as poverty, gender, and inequalities in health care. Women were the emblematic subjects in this study, not only because Zika virus is a vertical transmission disease, but also because women-in Brazil and elsewhere-typically represent the primary carers of children. This is a qualitative analytic study using semi-structured interviews with 23 female family carers of children with CZS in Brazil. Through the concept of biographical disruption, we analysed some of the social impacts experienced by women involved in caring for affected children. We identified that the arrival of a child with disabilities resulted in biographical disruption similar to that experienced by people with chronic illnesses. Social support networks were configured through an alliance between women from different generations, revealing solidarity networks, but also highlighting the absence of the state in tackling these social vulnerabilities. Tracing the pathways of these biographical narratives enables us to understand how women have acted to defend the value of their disabled children in a society structured on the model of body normativity and inequality. These results may provide clues to a more inclusive society, which confronts systems of gender oppression and the sexual division of labour focused on women.

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This article investigates how hope and trust played out for two groups at the forefront of the Zika epidemic: caregivers of children with congenital Zika syndrome and healthcare workers. We conducted 76 in-depth interviews with members of both groups to examine hope and trust in clinical settings, as well as trust in public institutions, in the health system and in the government of Brazil. During and after the Zika epidemic, hope and trust were important to manage uncertainty and risk, given the lack of scientific evidence about the neurological consequences of Zika virus infection. The capacity of healthcare workers and caregivers to trust and to co-create hope seems to have allowed relationships to develop that cushioned social impacts, reinforced adherence to therapeutics and enabled information flow. Hope facilitated parents to trust healthcare workers and interventions. Hope and trust appeared to be central in the establishment of support networks for caregivers. At the same time, mistrust in the government and state institutions may have allowed rumours and alternative explanations about Zika to spread. It may also have strengthened activism in mother's associations, which seemed to have both positive and negative implications for healthcare service delivery. The findings also point to distrust in international health actors and global health agenda, which can impact community engagement in future outbreak responses in Brazil and other countries in Latin America.

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Social science generates evidence necessary to control epidemics. It can help to craft appropriate public health responses, develop solutions to the epidemic impacts and improve understanding of why the epidemic occurred. Yet, there are practical constraints in undertaking this international research in a way that produces quality, ethical and appropriate data, and that values all voices and experiences, especially those of local researchers and research participants. In this paper, we reflected on the experience of undertaking social science research during the 2015/2016 Zika epidemic in Brazil. This experience was considered from the perspective of this paper's authors: three Brazilian academics, two UK academics and two mothers of children affected by congenital Zika syndrome. This group came together through the conduct of the Social and Economic Impact of Zika study, a mixed-methods social science study. The key findings highlight practical issues in the achievement of three goals: the conduct of high-quality social science in emergencies and efforts towards the decolonisation of global health in terms of levelling the power between Brazilian and UK researchers and optimising the role of patients within research. From our perspective, the information collected through social science was valuable, providing detailed insight into the programmatic needs of mothers and their affected children (eg, economic and social support and mental health services). Social science was considered a low priority within the Zika epidemic despite its potential importance. There were logistical challenges in conducting social science research, foremost of which are the difficulties in developing a trusting and balanced power relationship between the UK and Brazilian researchers in a short time frame. When these issues were overcome, each partner brought unique qualities, making the research stronger. The mothers of affected children expressed dissatisfaction with research, as they were involved in many studies which were not coordinated, and from which they did not see a benefit. In conclusion, the importance of social science in epidemics must continue to be promoted by funders. Funders can also set in place mechanisms to help equalise the power dynamics between foreign and local researchers, researchers and participants, both to promote justice and to create best quality data.

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The Congenital Zika Syndrome (CZS) epidemic took place in Brazil between 2015 and 2017 and led to the emergence of at least 3194 children born with CZS. We explored access to healthcare services and activities in the Unified Health Service (Sistema Único de Saúde: SUS) from the perspective of mothers of children with CZS and professionals in the Public Healthcare Network. We carried out a qualitative, exploratory study, using semi-structured interviews, in two Brazilian states-Pernambuco, which was the epicentre of the epidemic in Brazil, and Rio de Janeiro, where the epidemic was less intense. The mothers and health professionals reported that healthcare provision was insufficient and fragmented and there were problems with follow-up care. There was a lack of co-ordination and an absence of communication between the various specialized services and between different levels of the health system. We also noted a public-private mixture in access to healthcare services, resulting from a segmented system and related to inequality of access. High reported household expenditure is an expression of the phenomenon of underfunding of the public system. The challenges that mothers and health professionals reported exposes contradictions in the health system which, although universal, does not guarantee equitable and comprehensive care. Other gaps were revealed through the outbreak. The epidemic provided visibility regarding difficulties of access for other children with disabilities determined by other causes. It also made explicit the gender inequalities that had an impact on the lives of mothers and other female caregivers, as well as an absence of the provision of care for these groups. In the face of an epidemic, the Brazilian State reproduced old fashioned forms of action-activities related to the transmitting mosquito and to prevention with an emphasis on the individual and no action related to social determinants.

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Global concern broke out in late 2015 as thousands of children in Brazil were born with microcephaly, which was quickly linked to congenital infection with Zika virus (ZIKV). ZIKV is now known to cause a wider spectrum of severe adverse outcomes-congenital Zika syndrome (CZS)-and also milder impairments. This study aimed to explore the social and economic impacts of CZS in Brazil. Data was collected through mixed methods across two settings: Recife City and Jaboatão dos Guararapes in Pernambuco State (the epicentre of the epidemic), and the city of Rio de Janeiro (where reports of ZIKV infection and CZS were less frequent). Data was collected May 2017-January 2018. Ethical standards were adhered to throughout the research. In-depth qualitative interviews were conducted with: mothers and other carers of children with CZS (approximately 30 per setting), pregnant women (10-12 per setting), men and women of child-bearing age (16-20 per setting), and health professionals (10-12 per setting). Thematic analysis was undertaken independently by researchers from at least two research settings, and these were shared for feedback. A case-control study was undertaken to quantitatively explore social and economic differences between caregivers of a child with CZS (cases) and caregivers with an unaffected child (controls). We aimed to recruit 100 cases and 100 controls per setting, from existing studies. The primary caregiver, usually the mother, was interviewed using a structured questionnaire to collect information on: depression, anxiety, stress, social support, family quality of life, health care and social service use, and costs incurred by families. Multivariable logistic regression analyses were used to compare outcomes for cases and controls. Costs incurred as a result of CZS were estimated from the perspective of the health system, families and society. Modelling was undertaken to estimate the total economic burden of CZS from those three perspectives.