Abstract

In 2015 the correlation between increasing numbers of cases of microcephaly and a zika virus outbreak led to recognition of an epidemic of congenital zika virus syndrome (CZVS), highlighting well-known weaknesses in health care measures. This article examines the network of virtual information available on health service provision for children suffering from CZVS in Rio de Janeiro. Using social media analysis, data on information about services and care institutions were collected from virtual sources using the Google search engine, so as to assess relations among these actors in 2018. The results revealed a fragmented network centred on virtual sources and secondary and tertiary public care services, with striking proximity of press sources to public services. Also salient was the isolation of private services and the lack of dialogue between philanthropic and public services. Moreover, the information offered was found to be insufficient and superficial, despite the gaps in the formal rehabilitation network. The evidence thus suggested the importance of a well-established health care service network and the necessity of fostering communication through virtual media.

Key words:
Zika virus; Microcephaly; Social networking; Access to information; Health service accessibility

Introduction

In 2015 incidence of cases of microcephaly increased in a number of countries simultaneously with the Zika virus (ZikaV) outbreak. Confirmation of that correlation led to the recognition of an epidemic of Congenital Zika Virus Syndrome (CZVS). Given a Public Health Emergency of National Concern (PHENC) and a Public Health Emergency of International Concern (PHEIC), the Ministry of Health (MoH) introduced the National Plan to Combat Microcephaly (Plano Nacional de Enfrentamento da Microcefalia). This contemplated measures for surveillance of microcephaly and Zika cases, vector control, health care organisation to monitor and provide care to expectant mothers and children, organisation of a rehabilitation network and early stimulation of newborns¹1 Brasil. Ministério da Saúde (MS). Plano Nacional de Enfrentamento à Mmicrocefalia. Brasília: MS, 2015. - all of which pointed to gaps and difficulties pre-dating the CZVS epidemic.

In order for access to diagnostic services and treatment to secure the greatest gains in functionality for children presenting with disability, the health care system (HCS) must offer comprehensive care and collaboration among primary health care (PHC) and specialised health care (SHC) services. Brazil’s HCS embodies the national comprehensive children’s health care policy (Política Nacional de Atenção Integral à Saúde da Criança, PNAISC), the national health policy for people with disability (Política Nacional de Saúde da Pessoa com Deficiência) and the health care network for people with disability (Rede de Cuidados à Saúde da Pessoa com Deficiência, RCPD) and the national primary health care policy (Política Nacional de Atenção Básica, PNAB)²2 Brasil. Ministério da Saúde (MS). Secretaria de Vigilância em Saúde. Orientações integradas de vigilância e atenção à saúde no âmbito da Emergência de Saúde Pública de Importância Nacional: procedimentos para o monitoramento das alterações no crescimento e desenvolvimento a partir da gestação até a primeira infância, relacionadas à infecção pelo vírus Zika e outras etiologias infeciosas dentro da capacidade operacional do SUS. Brasília: MS; 2017..

Although PHC is regarded as organising the system, specialised care for mothers and their newborn babies was not satisfactorily connected with primary care. In addition, care was lacking in peripheral urban areas, as was known to be the case prior to the Zika epidemic, but worsened as the number of SCZV cases increased³3 Diniz D. Zika: do sertão nordestino à ameaça global. Rio de Janeiro: Civilização Brasileira; 2016.. From 2015 to 2019 MoH epidemiological bulletins confirmed 3,474 cases in Brazil, of which 2,121 (71.4%) received some kind of care in the health system. Of these latter, 1,860 (62.6%) received PHC and 1,805 (60.8%), SHC⁴4 Diniz D. Síndrome congênita associada à infecção pelo vírus Zika: situação epidemiológica, ações desenvolvidas e desafios, 2015 a 2019. Bol Epidemiol [Internet]. 2019 nov.. Despite the MoH’s efforts to expand rehabilitation services, a considerable portion of the children had no access to such services and nor was it possible to measure the quality of these facilities or the frequency and conditions of families’ access to them.

One of the characteristics of health service (HS) provision is access, which can be defined as the possibility of using HSs appropriately when necessary. It comprises several dimensions including availability, ability to pay and information. Many authors consider the latter to be key to the equity debate⁵5 Sanchez RM, Ciconelli RM. Conceitos de acesso à saúde. Rev Panam Salud Publica 2012 ;31(3):260-268.. The information dimension can be evaluated by the “information sources” indicator pointing to the possibility of reaching the HS, which depends both on the individual’s attitude to the disease and to the characteristics of care provision. Difficulty in accessing the HS, rehabilitation and early stimulation contributes to impaired quality of life, increased carer stress, delayed definitive diagnosis and appropriate treatment, as well as to the travel and costs entailed⁵5 Sanchez RM, Ciconelli RM. Conceitos de acesso à saúde. Rev Panam Salud Publica 2012 ;31(3):260-268.^,66 Carroll CB, Gomide M. Análise de redes na regulação do tratamento do câncer do aparelho digestivo. Cad Saude Publica 2020; 36(1):e00041518..

The concept of regulation instituted by Brazil’s National Regulation Policy in 2008 was introduced in reductionist form, basing provision on available services and resources. However, regulation of access, planning and care organisation came to be based on the population’s health needs rather than on available supply. Municipalities where SHC services are concentrated receive local users, plus others from the local region catchment area and still others whose private health insurance offers only partial coverage and who thus resort to the national health system (SUS) for the more costly procedures⁷7 Brasil. Conselho Nacional de Secretários de Saúde (CONASS). Regulação em Saúde. Brasília: CONASS; 2007.. Analysis of information distribution among health system actors is one tool to elucidate and improve communication processes by identifying asymmetries. Missing or deficient information on the real options available in the health context limits users’ perceptions and possible choices⁵5 Sanchez RM, Ciconelli RM. Conceitos de acesso à saúde. Rev Panam Salud Publica 2012 ;31(3):260-268..

Araújo and Cardoso (2007)⁸8 Araújo I, Cardoso J. Comunicação e saúde. Rio de Janeiro: Fiocruz, 2007. address disputes among discourses and practices in the health communication process, which produces social meanings over and beyond its content. They show the that “communication is associated with politics and the right to citizenship, to health and to the principles of the SUS”. Accordingly, this entails affording the population access to various communications media; contemplating socioeconomic and cultural differences, so as to prevent harm being caused by difficulties in accessing information and health care; fostering participation in local decisions by strengthening communication channels; and encouraging greater involvement by state and municipal governments in SUS communication⁸8 Araújo I, Cardoso J. Comunicação e saúde. Rio de Janeiro: Fiocruz, 2007..

The ease with which a variety of information sources can be set up to enter into an endless number of topics has made the Internet an instrument for spreading information and conducting countless searches in the health field. It is fundamentally important to understand better the metrics or patterns of online searches for health information, given that Internet users can be exposed to a great deal of dubious and poor quality information. It is difficult to arrive at reliable information, because the quantity of data makes it hard to locate reliable sources⁹9 Moretti FA, Oliveira VE, Silva EMK. Acesso a informações de saúde na internet: uma questão de saúde pública? Rev Assoc Med Bras 2012; 58(6):650-658.^,1010 Andrade GRB, Vaitsman J. Apoio social e redes: conectando solidariedade e saúde. Cien Saude Colet 2002; 7(4):925-934..

CZVS accentuated the urgency of the right of access to health, as well as highlighting limitations and discrepancies between health policy organisation and the related legislation. Studies have mapped people’s origins and destinations for the purpose of identifying the real situation of health care, with its shortcomings and/or successes⁶6 Carroll CB, Gomide M. Análise de redes na regulação do tratamento do câncer do aparelho digestivo. Cad Saude Publica 2020; 36(1):e00041518.^,1111 Rossi LP, Lovisi GM, Abelha L, Gomide MSM. Caminhos virtuais e autismo: acesso aos serviços de saúde na perspectiva da análise de redes sociais. Cien Saude Colet 2018; 23(10):3319-3326..

Social network analysis (SNA) has been used in Brazilian and international studies in the collective health field to identify and understand information flows and the roles of the various actors involved in the networks. Those studies can contribute to more effective policymaking for access to public health services (PHSs) that meet real needs⁶6 Carroll CB, Gomide M. Análise de redes na regulação do tratamento do câncer do aparelho digestivo. Cad Saude Publica 2020; 36(1):e00041518.^,1111 Rossi LP, Lovisi GM, Abelha L, Gomide MSM. Caminhos virtuais e autismo: acesso aos serviços de saúde na perspectiva da análise de redes sociais. Cien Saude Colet 2018; 23(10):3319-3326.

12 Gomide MSM, Grossetti M. Rede social e desempenho de programas de saúde: uma proposta investigativa. Physis 2010; 20(3):873-893.^-1313 Fontes BAS-M. Redes sociais e poder local. Recife: Editora UFPE; 2012.. SNA is an appropriately structured instrument for this study into SHC service provision in relation to CZVS. Drawing on information from Internet search sites, it has the ability to identify the underlying structure of the social system, bringing out regularities in actors behaviours and exchanges of resources, which point to how they are interdependent and influence one another¹⁰10 Andrade GRB, Vaitsman J. Apoio social e redes: conectando solidariedade e saúde. Cien Saude Colet 2002; 7(4):925-934.. To the authors’ knowledge, this is the first time that SNA theory has been applied to understanding this issue in relation to obtaining care for CZVS. It is important to note the differences among the terms SNA theory, social media networks and health care networks.

Even with regulation in place, large numbers of patients still enter flows at variance with those recommended⁶6 Carroll CB, Gomide M. Análise de redes na regulação do tratamento do câncer do aparelho digestivo. Cad Saude Publica 2020; 36(1):e00041518.. Given that their efforts to find information on rehabilitation services are not facilitated, an SNA approach to the issue would seem to be an effective methodological strategy, because it allows the actors and their relationships to be visualised, making it a practical tool for planning and management.

Rio de Janeiro (RJ), an area affected by the epidemic, has a population with multiple demands and an insufficient and underused health care system in which many difficulties arise daily between planned HS availability and actual use. As a result, demand is ultimately conditional on the pattern of existing supply¹¹11 Rossi LP, Lovisi GM, Abelha L, Gomide MSM. Caminhos virtuais e autismo: acesso aos serviços de saúde na perspectiva da análise de redes sociais. Cien Saude Colet 2018; 23(10):3319-3326.^,1414 Freitas DA, Wakimoto MD, Santos RS. Síndrome congênita por zika vírus: análise espacial das unidades de reabilitação. In: Anais do 8° Congresso Brasileiro de Ciências Sociais e Humanas em Saúde 2019; João Pessoa.^,1515 Silva TS, Junior JCBS, Rigato AFG, Moura GL, Carvalho S, Pereira RSV, Lugarinho LMP. A experiência do estado do Rio de Janeiro no enfrentamento da infecção congênita pelo vírus zika: onde e como estão estas crianças? In: Lugarinho LMP, Penello LM, Pereira RSV, organizadores. Síndrome congênita do zika: construção de uma rede viva de cuidado; 2019.. Accordingly, this study examined the virtual information network regarding provision of health services for children with CZVS in RJ.

Method

The frame of reference for this study involves the exploratory network analysis model¹⁶16 Nooy W, Mrvar A, Batagelj V. Exploratory social network analysis with Pajek. New York: Cambridge University Press; 2011., which features four stages: network specification; network data treatment; determination of structural characteristics; and visual inspection. Their goal is to identify and interpret social patterns in relations among network actors. Therefore, this study focusses on analysing connections between virtual sources and care sites mentioned by those sources. Note that the visual inspection is a key stage, because it allows relationship patterns to be mapped and displayed more easily and visibly, in addition to supporting the definition of network structural characteristics and an improved understanding of results¹⁷17 Sampaio RB, Sacerdote HCS, Fonseca BPF, Fernandes JHC. A colaboração científica na pesquisa sobre coautoria: um método baseado na análise de redes. Perspect Cienc Inf 2015; 20(4):79-92..

Here it was proposed to construct and analyse the virtual information network relating to provision of SHC services for CZVS in RJ, with reference to the outbreak that occurred in 2016. However, data were collected in 2018 (6 June 2018), as they resulted from a research project begun in 2017. In this method, the data collected always refer to a specific date, thus providing a panorama of the moment, which is necessary in order to visualise the network graph. In some cases, data collection may be repeated so as to examine how relations change over time¹²12 Gomide MSM, Grossetti M. Rede social e desempenho de programas de saúde: uma proposta investigativa. Physis 2010; 20(3):873-893..

Information was collected from the virtual sources (VSs) of care services and institutions. Data were collected by the simple Google search mechanism, so as to simulate a search by an ordinary citizen seeking virtual information on care for CZVS. Google has been Brazilians’ main source of information and an important search channel on questions relating to diseases and treatments. It was chosen for data collection because of its high prevalence in searches for medical treatment (60%), general information on diseases (52%), causes and symptoms (48%), information on medicines (40%), potential consequences of treatments (39%), searches for specialists (39%), disease diagnosis (28%) and topics including nutrition, diet, physical condition and child health¹⁸18 Google. O uso da internet no Brasil para pesquisas sobre saúde, doenças e medicamentos. Media Screen; 2008.. Also, the search strategy via simple search engines (Google, Yahoo etc.) is now being used as the primary source of health information¹⁶16 Nooy W, Mrvar A, Batagelj V. Exploratory social network analysis with Pajek. New York: Cambridge University Press; 2011.. Accordingly, for this study, the Google digital channel was chosen to perform the Internet field research, because it is one of the most powerful virtual search tools available.

It was necessary to test that search engine with a set of terms on different computers and at different times, so as to avoid the invisible filter that prevents total access to the Internet¹⁹19 Pariser E. O filtro invisível: o que a internet está escondendo de você. Rio de Janeiro: Zahar; 2012.. The combination of words that specified the search terms was [in Portuguese] “Health care for children with microcephaly in Rio de Janeiro” and “Rehabilitation for children with microcephaly in Rio de Janeiro”, with no use of additional tools and without quotes. For now, the study was not intended to explore other possible combinations of terms¹¹11 Rossi LP, Lovisi GM, Abelha L, Gomide MSM. Caminhos virtuais e autismo: acesso aos serviços de saúde na perspectiva da análise de redes sociais. Cien Saude Colet 2018; 23(10):3319-3326..

The term “microcephaly” was chosen for being the most widespread and well-known among the public at that time, besides being a common worry among parents concerned with the sequela and no longer with the virus. The major media mentioned only the term microcephaly and by 2020 it was already being used by the Rio de Janeiro state health department (Secretaria Estadual de Saúde do Rio de Janeiro, SES/RJ) website devoted to the campaign against the ZikaV²⁰20 Governo do Estado do Rio de Janeiro. Xô Zika: campanha contra Zika da Secretaria Estadual de Saúde do Rio de Janeiro [Internet]; 2019. [acessado 2020 Fev 20]. Disponível em: http://www.xozika.rj.gov.br/site/conteudo/
http://www.xozika.rj.gov.br/site/conteud... . Also corroborating the specification of the term, Fleischer (2017)²¹21 Fleischer S. Segurar, caminhar e falar notas etnográficas sobre a experiência de uma "mãe de micro" no Recife/PE. Cadernos Gen Div 2007; 3(2):93-112. showed that mothers identified children with microcephaly rather than with CZVS. In addition, searching with the term “CZVS” returned hits comprising scientific articles and thus reflecting more academic environments.

Although the study focused on rehabilitation services, it is important to acknowledge the importance of the HCS to providing effective care and to consider the interfaces with other facilities in the territory, as well as social assistance and education services. For that reason, it was decided to record all the services mentioned by the VSs encountered, with no restrictions, because the presence or absence of such services also points to how the rehabilitation network is organised (e.g., when, for lack or insufficiency of rehabilitation services, demand for rehabilitation care is absorbed by tertiary services)²²22 Ministério Público Federal. Procuradoria Federal dos Direitos do Cidadão. Políticas de atenção e prevenção às vítimas do vírus da Zika são debatidas no Rio de Janeiro [Internet]; c2017. [acessado 2018 Set 28] Disponível em: http://www.mpf.mp.br/pfdc/eventos/2017/politicas-publicas-e-epidemia-do-virus-zica/menu
http://www.mpf.mp.br/pfdc/eventos/2017/p... .

In the digital humanities, one area of interest is developments in new ways of visualising information. Many software options exist for analysing networks of both institutional and personal interrelationships, and offer the possibility of processing and organising large amounts of information and displaying network measurements, which are selected in advance to reflect the characteristics of interest to the analysis¹³13 Fontes BAS-M. Redes sociais e poder local. Recife: Editora UFPE; 2012.. These include degree centrality (which measures which element has most interconnections with others) and density (to what extent all possible connections in a network are used)²³23 McCarty C. La estrutura em las redes personales. Redes 2010; 19(11):242-271.. One much used tool for manipulating sociograms (graphs resulting from interactions) is the collaborative freeware, Gephi. This is an interactive platform for structuring and visualising networks. Its flexible architecture and multi-tasking offer new opportunities for working with complex datasets and producing valuable visual results²⁴24 Bastian M, Heymann S, Jacomy M. Gephi: an open source software for exploring and manipulating networks. ICWSM 2009; 3(1):361-362. and it has been useful in evaluating health programmes and services⁶6 Carroll CB, Gomide M. Análise de redes na regulação do tratamento do câncer do aparelho digestivo. Cad Saude Publica 2020; 36(1):e00041518.^,1111 Rossi LP, Lovisi GM, Abelha L, Gomide MSM. Caminhos virtuais e autismo: acesso aos serviços de saúde na perspectiva da análise de redes sociais. Cien Saude Colet 2018; 23(10):3319-3326..

The network metrics presented in this study were calculated using Gephi version 0.9.2. The data collected were recorded on Excel spreadsheets containing the name of the information source, the type of VS (government, press, third sector or private) and then the names of the care facilities mentioned by each VS and the type of service (public, private and philanthropic). Chart 1 shows a summary of the meanings of the metrics used. Gephi organises information into tables or matrices. The table format used comprised a Source column containing the VS (represented by node numbering from 1 to 41); a Target column indicating the services (actors, numbered from 42 to 122) mentioned by informants; a Type column giving the linkage type (directed or undirected) of the edges, i.e., the links between nodes; and a Weight column with measures of the strength of the link between two nodes. Layout by Fruchterman and Reingolde and Rotate algorithms was selected, with visual parameters set to colour-code the service types, represent actors’ degree centrality by their size in the network and indicate edge weights by line thickness.

The attributes table generated by Gephi showed nodes in columns with codes (LABEL), name, node type (virtual source or service), VS classification (government, press, third sector or private). Other attributes identified included a classification of the services mentioned (public, philanthropic or private), VS publication date (identifying the CZVS health emergency period), the state and municipality of the service mentioned, type of health care and specialities offered by the services. The edges table identified the links between the respective nodes for direct relations between VSs and services. Services mentioned by a VS outside the municipality and state of RJ were also recorded.

Given that each metric serves a purpose, the classic structural measurements “degree centrality” and “betweenness centrality” were used to analyse the sociogram, because they met the study objective²³23 McCarty C. La estrutura em las redes personales. Redes 2010; 19(11):242-271.. Degree centrality measures a node, representing one of the persons or institutions which are the elements that participate in the network and are linked by connections called edges. It measures the node’s importance within the network, which is quantified as the number of direct links established by any given node or actor⁶6 Carroll CB, Gomide M. Análise de redes na regulação do tratamento do câncer do aparelho digestivo. Cad Saude Publica 2020; 36(1):e00041518.. As the links (edges) of this network are directed, i.e., go towards another node, it is possible to calculate any node’s “indegree” and “outdegree”, i.e., how much a source node mentioned some other node is its outdegree and how much the service node was mentioned is its indegree.

Average degree is measure of the node; in this network, the average degree metric (overall panorama) returned a value of 1.303, indicating a lack of centrality among the HSs mentioned. Modularity, a network metric involving an algorithm used to observe the number of communities in a given sociogram, shows whether or not the network is fragmented to form groups or small nuclei also known as cliques or clusters. When the actors (or nodes) are strongly interconnected, there are large flows between them, which fosters strong cohesion. In this network, the high value of the modularity metric, which identifies groups, points to how particulate the network is, as corroborated by the nodes’ lack of centrality even within the groups involved. In this study, modularity of 0.698 indicated that the network was fragmented²⁵25 Marteleto RMS. Análise de redes sociais - aplicação nos estudos de transferência da informação. Ciência da Informação 2001; 30(1):71-81..

To return to the connections between nodes, these can be of two kinds, i.e., connections between target and source nodes can be unilateral or bilateral. In the network analysed in this study, services mentioned are linked with VSs, which requires that the direction of the relationship be differentiated to show that it is oriented from the virtual source to the service mentioned. In the graph, arrows indicate the direction of the relationship (who is providing information about whom), thus characterising the relationship between nodes (Sociogram A). When the informant (VS) mentions a service, providing information about the care network, the actor mentioned will be represented in the network as an institutional node.

As regards ethical concerns, this study used free-access, virtual information in the public domain and, as such, under National Health Council Resolution No. 466/2012 and ethical principles it contains, was not required to be submitted for evaluation by the research ethics committee, because it did not involve human subjects.

Results

The Google search returned 81 public, philanthropic or private services, mentioned by 40 government, press, third sector or private VSs. From these data, seven sociograms were generated: (a) a panorama of the network of virtual information on care for CZVS in Rio de Janeiro, which provided the basis for the others; (b) the same, but by modularity and degree of betweenness; (c) focusing on the type of service; (d) focusing on the home states of the services mentioned; (e) showing the period of the CZVS public health emergency; (f) showing the type of health care offered by the services mentioned; and (g) showing the type of specialities offered by the services mentioned.

The network (a) comprised 122 nodes (actors), representing the VSs and the services mentioned. The edges, meanwhile, described 159 connections between actors. In all, 41 VSs were studied, 15 of them government, 16 press, 6 third sector and 4 private. These VSs mentioned 81 services: 30 public, 26 philanthropic and 25 private. Network density was 1.1% of all possible relationships, fostering extremely few links.

The Paulo Niemeyer State Brain Institute (Instituto Estadual do Cérebro Paulo Niemeyer, IEC) returned highest indegree, i.e., it was mentioned by 17 different VSs, followed by the services of the Specialised Rehabilitation Centres (Centros Especializados de Reabilitação, CERs), Family Health Support Nucleus (Núcleo de Apoio à Saúde da Família, NASF), Fernandes Figueira Institute (Instituto Fernandes Figueira, IFF) and PHC facilities. The VS with the highest outdegree was the Down Movement NGO (Movimento Down) (TS4), which mentioned 23 private services, and displayed a degree of isolation, because there were no connections with other care sites nor indications of other private services by other VSs (a). Note that the Rio de Janeiro state health department (SES/RJ) (GA5) mentioned 21 services.

The community representing most actors belonged to the PHSs grouping and government VSs (about 37%), then the group of third sector VSs and philanthropic services (26%), then private VSs and private services (24%). The smallest grouping was the press VSs, because it only indicated services, most of them public (13%) (Figure 1).

The second VS to stand out for its degree centrality was the SES/RJ (Figure 1), which mentioned 21 services, 3 of them national in scope, 1 offering tertiary care (IEC), 17 in the RCPD disability care network (five public and 12 philanthropic institutions). The philanthropic and public VSs - respectively, OCA (F3) and Mesquita municipal government (PM) - formed clusters: the former mentioned two public hospitals (tertiary care) and one philanthropic institution, while the PM mentioned the services available in its municipal area and was the only source to mention psycho-pedagogical care in a municipal school. Degree of betweenness can be observed in the groups of public, philanthropic, private and press actors, constituting modularity. The size of each node in the network graph reflects its degree of betweenness: the larger the node, the greater its betweenness.

In the third graph (c), the PHSs mentioned predominate: of the 81 services, 30 were public (37%), 26 were philanthropic (32%) and 25 were private (31%). The VSs were found to mention PHSs recurrently, producing more links and a fuller network. In case (d), showing the relationships encountered during the period of the public health emergency, about 70% of the network is made up of municipalities in RJ state, which is to be expected, and particularly the capital (38%). VSs also mentioned services in municipalities of other states, particularly in the northeast region, the worst affected by the CZVS epidemic. As the press is one of the VSs that appeared most, it contributed CZVS-related information beyond Rio de Janeiro. Most VSs of private institutions (3 of 4) also mentioned services outside RJ. Table 1 shows the network composition by municipalities mentioned by the various VSs.

The websites that most mentioned services in RJ originated with government, philanthropic institutions and the press. However, while there were 15 press VSs, only 6 corresponded to philanthropic institutions and one of those alone accounted for 23 mentions of services. The press VSs were an important means of circulating information. The case (e) sociogram (Figure 2) depicts that situation.

Of the total of 41 VSs, 66% returned a publication date during the public health emergency: 41% during the PHEIC and 22% during the PHENC. Only two philanthropic sites (5%) (Down Movement and ABBR) publicised services prior to the CZVS (PREM). The case (e) sociogram (Figure 2) shows that the sites mentioned care services most during the period of the PHEIC, followed by mentions by VSs following the emergency (PEM).

The services most mentioned by VSs were those offering secondary care (SC) (75%); of these 57 services, some were mentioned more than once. Also mentioned were services offering tertiary care (20%), PHC (5%), social assistance (2.5%) and education (0.5%). The IEC was mentioned 17 times, 10 by government sites and 7 by press sites. The CER was mentioned 11 times (by 4 press, 3 private, 3 public and 1 philanthropic VSs).

In case (g), by type of speciality offered by the services mentioned, half (40) did not give that information. Most of those that did mentioned care by health professionals (60%), particularly speech therapy (27) and physiotherapy (23). There were 41 records relating to diagnostic testing and 36 indicating the type of disability for which care was offered. The numbers of mentions in the Therapies (23), Social Assistance (21) and PHC (16) categories were similar, while Education was mentioned nine times.

Discussion

From the networks, centralisation was found in VSs and PHSs relating to secondary and tertiary care, featuring particularly close relations between press sources and PHSs. The degree centrality of the IEC, in case (b), makes it one of the highest-visibility nodes in terms of potential for communication among actors in the network. This can be explained by its having been the health centre chosen by the SES/RJ to receive children with microcephaly in RJ, as was made public on 29 February 2016, shortly after the WHO declared the PHEIC. In this period, the topic was prominent in the press, which - together with government sources - reported that care was offered at the IEC. In case (e), about 40% (17 of 41) of the VSs that appear in the study refer to the PHEIC. Practically all the VSs identified tertiary care centres and many described what types of services were offered.

Rehabilitation requires constancy in care at short intervals and, accordingly, the graph shows a positive result, in that VSs concentrated on SC services. In case (f), this can be seen to indicate that there was an awareness in the network of their importance to treatment and a recognition of the need for access. However, although 81 services were mentioned, social network analysis suggested that the information provided on these institutions was superficial and insufficient.

In case (c), nearly all the government VSs contain information on some or all of the services, but using nomenclature that does not direct to specific institutions. That information presented with so many omissions points to the quality of the information offered. Only one VS of the SES/RJ mentioned the CERs, giving the name and centre where they operated, but in an annex to the SEASDH/SES-RJ Joint Technical Note No. 01, which would require in-depth reading of the document in order to encounter that information. One exception that should be highlighted is the Mesquita municipal government, which identified all the services it mentioned.

This means that all families of children with CZVS had to search using personal resources, such as the Internet, in order to find institutions for continuous care. A study addressing the social implications of CZVS showed that the mothers interviewed searched randomly for referral centres. The following excerpt stands out: “For lack of a previously structured flow, the Internet and the experience of other mothers encountered in health centre corridors figured as the main sources of information and guidance as regards treatment” (Mendes et al., 2019)²⁶26 Mendes AG, Campos DS, Silva LB, Moreira MELM, Arruda LO. Enfrentando uma nova realidade a partir da síndrome congênita do vírus zika: a perspectiva das famílias. Cien Saude Colet 2019; 25(10):3785-3794.. The Internet is a complex virtual universe with no territorial base, but that does not entail people’s distancing themselves from their everyday experience (their “traditional socialities”) nor that there is any single pattern of connections on the Internet¹³13 Fontes BAS-M. Redes sociais e poder local. Recife: Editora UFPE; 2012..

The modularity metric suggests that users organised informally in their personal networks, despite the gaps in the formal rehabilitation network. That weakness was evident in the network’s small flow of connectivity and in the absence of referral and counter-referral by health personnel at the time of the epidemic²²22 Ministério Público Federal. Procuradoria Federal dos Direitos do Cidadão. Políticas de atenção e prevenção às vítimas do vírus da Zika são debatidas no Rio de Janeiro [Internet]; c2017. [acessado 2018 Set 28] Disponível em: http://www.mpf.mp.br/pfdc/eventos/2017/politicas-publicas-e-epidemia-do-virus-zica/menu
http://www.mpf.mp.br/pfdc/eventos/2017/p... . Actors’ positions determine control over information about resources, and greater or lesser porosity in the network structure depends on how that information is circulated among them. Studies corroborating these data¹⁴14 Freitas DA, Wakimoto MD, Santos RS. Síndrome congênita por zika vírus: análise espacial das unidades de reabilitação. In: Anais do 8° Congresso Brasileiro de Ciências Sociais e Humanas em Saúde 2019; João Pessoa.^,1515 Silva TS, Junior JCBS, Rigato AFG, Moura GL, Carvalho S, Pereira RSV, Lugarinho LMP. A experiência do estado do Rio de Janeiro no enfrentamento da infecção congênita pelo vírus zika: onde e como estão estas crianças? In: Lugarinho LMP, Penello LM, Pereira RSV, organizadores. Síndrome congênita do zika: construção de uma rede viva de cuidado; 2019.^,2626 Mendes AG, Campos DS, Silva LB, Moreira MELM, Arruda LO. Enfrentando uma nova realidade a partir da síndrome congênita do vírus zika: a perspectiva das famílias. Cien Saude Colet 2019; 25(10):3785-3794. point to difficulties in accessing services: of 50 children in rehabilitation monitored by the IFF, 22 did not have full access to a rehabilitation service²⁶26 Mendes AG, Campos DS, Silva LB, Moreira MELM, Arruda LO. Enfrentando uma nova realidade a partir da síndrome congênita do vírus zika: a perspectiva das famílias. Cien Saude Colet 2019; 25(10):3785-3794.; and in 2016 a spatial analysis of notified microcephaly cases, by municipality in RJ and by rehabilitation centre, indicated difficulties in access to a specialised health service in areas more distant from the state capital. This demonstrates that it is important to ascertain what care flows are established and to examine trajectories to obtaining care and ease and difficulty of access ¹⁴. This situation was also described by a SES/RJ report¹⁵15 Silva TS, Junior JCBS, Rigato AFG, Moura GL, Carvalho S, Pereira RSV, Lugarinho LMP. A experiência do estado do Rio de Janeiro no enfrentamento da infecção congênita pelo vírus zika: onde e como estão estas crianças? In: Lugarinho LMP, Penello LM, Pereira RSV, organizadores. Síndrome congênita do zika: construção de uma rede viva de cuidado; 2019., which highlighted the 13 CERs and their locations in RJ state (7 are in the state capital). It found that, in the territories, measures are still disjointed and that this hinders the construction of care flows¹⁵15 Silva TS, Junior JCBS, Rigato AFG, Moura GL, Carvalho S, Pereira RSV, Lugarinho LMP. A experiência do estado do Rio de Janeiro no enfrentamento da infecção congênita pelo vírus zika: onde e como estão estas crianças? In: Lugarinho LMP, Penello LM, Pereira RSV, organizadores. Síndrome congênita do zika: construção de uma rede viva de cuidado; 2019..

Relations of centrality in the network and how information on resources flows produce more open or closed patterns of interaction among actors. Such mentions can be instrumentalised in a health communication process and thus indicate opportunities for building effective information on access⁸8 Araújo I, Cardoso J. Comunicação e saúde. Rio de Janeiro: Fiocruz, 2007.^,1313 Fontes BAS-M. Redes sociais e poder local. Recife: Editora UFPE; 2012.. The recently structured SUS Rehabilitation Network (Rede de Reabilitação, RR) comprises facilities offering services managed totally by the public sector or by philanthropic institutions under agreements with the MoH²⁷27 Brasil. Ministério da Saúde (MS). Portaria nº 793, de 24 de abril de 2012. Institui a Rede de Cuidados à Pessoa com Deficiência no âmbito do Sistema Único de Saúde. Brasília: MS; 2012.. Design of the RR did not proceed as quickly as necessary. Press portals encountered by this study reported that the MoH website failed to specify either these services’ capacity or where new facilities were being installed²⁸28 Amaral T. Drama da microcefalia expõe ferida da microcefalia no Brasil [Internet]. Revista Exame 2017. [acessado 2018 Mar 5]. Disponível em: https://exame.abril.com.br/brasil/drama-da-microcefalia-expoe-feridas-da-saude-no-brasil/
https://exame.abril.com.br/brasil/drama-... . Brazil had no infrastructure even for existing cases of severe cerebral palsy, far less for those that were emerging²⁹29 Castro CP, Campos GWS. Apoio matricial como articulador das relações interprofissionais entre serviços especializados e atenção primária à saúde. Physis 2016; 26(2):455-481.. The political and economic scenario in Brazil was critical and a history of low investments in health care was further impacted by a constitutional amendment capping public spending, which will limit growth in State expenditures for the next 20 years. While it was already difficult to use funding during the Zika epidemic, the prospect is now that the spending freeze will worsen the scrapping of PHSs. The measure overburdens the states and municipalities with financial responsibilities and they will now have to provide access to information and services in a restrictive context, which may have more severe impacts on the poorer members of the population³⁰30 Melo EA, Mendonça MHM, Teixeira M. A crise econômica e a atenção primária à saúde no SUS da cidade do Rio de Janeiro, Brasil. Cien Saude Colet 2019; 24(12):4593-4598.^,3131 Center for Reproductive Rights. Unheard voices: women's experiences with zika in Brazil [Internet]; 2018. [acessado 2018 set 28]. Disponível em: https://reproductiverights.org/unheard-voices-womens-experiences-with-zika-the-global-response/
https://reproductiverights.org/unheard-v... .

In the graph for this study, the configuration of the SES VS reporting the SEASDH/SES-RJ Joint Technical Note No. 01 suggests a cluster regarding the services mentioned that make up the RCPD, because it is the only source to mention them. However, in the network structure, it is also an actor that bridges to other services and can contribute to “optimising relationships and maximising contacts”, “facilitating the flow of information”, which indicates some degree of betweenness²⁵25 Marteleto RMS. Análise de redes sociais - aplicação nos estudos de transferência da informação. Ciência da Informação 2001; 30(1):71-81..

In practice, this means that the nodes representing the RCPD are isolated, with no potential to intermediate among network components. It can be inferred that RCPD services did not receive information originating from most of the VSs, were not points of reference on the graph and did not display information centrality, suggesting that they would have had difficulty absorbing the kind of demand addressed by the health policy in question. The modularity of 0.698 identifies a lack of centrality and a fragmented network, which is at odds with the MoH policy. This finding shows the importance of the proposal for referral and counter-referral³²32 Rodrigues MLF, Gomide MSM. Acesso através da análise de redes sociais à fitoterapia na saúde básica. Redes. Revista Hispana para el Análisis de Redes Sociales 2019 30(2):244-253.. The difficulty of accessing and providing information on SHC facilities and the lack of referrals from diagnostic facilities to SHC are serious obstacles to effective treatment and entail enormous public health risks²⁶26 Mendes AG, Campos DS, Silva LB, Moreira MELM, Arruda LO. Enfrentando uma nova realidade a partir da síndrome congênita do vírus zika: a perspectiva das famílias. Cien Saude Colet 2019; 25(10):3785-3794..

The third sector VSs do not foster information flows among their philanthropic services, particularly among the institutions that form part of the RCPD in RJ, as can be seen in case (c). Thus, despite the number of philanthropic services found in the search (26), it seems to be a challenge to obtain information on care for CZVS from third sector VSs established and organised by civil society for people with disability (and the NGOs do not mention PHSs). Case (f) shows scant information on social assistance and education policy in the search for care (Figure 3). Although the mentions are superficial, their very presence signals the importance of interdisciplinarity, because guaranteeing health in its broadest sense entails collaboration and coordination with social policies.

The VSs with most interconnections are those pertaining to press (16) and government (15). These seem to exert a considerable influence on the virtual information flows, at the same time as they can be seen to be insufficient; see Figure 1, relating to sociogram (b). That fact suggests a direction relationship with being in the midst of an epidemic of interest to the media: the items news dated mostly from the period from 2016 to 2017; see Figure 2, relating to sociogram (e). Rossi et al. (2018), investigating services offering care for autistic children in RJ, found only two VSs originating with the press¹¹11 Rossi LP, Lovisi GM, Abelha L, Gomide MSM. Caminhos virtuais e autismo: acesso aos serviços de saúde na perspectiva da análise de redes sociais. Cien Saude Colet 2018; 23(10):3319-3326.. In the study reported here, meanwhile, all the 15 press VSs mentioned services in RJ or at the national level, pointing emphatically to difficulties and gaps in this network of services. In 2020 the SES/RJ’s Shoo Zika (Xô Zika)²⁰20 Governo do Estado do Rio de Janeiro. Xô Zika: campanha contra Zika da Secretaria Estadual de Saúde do Rio de Janeiro [Internet]; 2019. [acessado 2020 Fev 20]. Disponível em: http://www.xozika.rj.gov.br/site/conteudo/
http://www.xozika.rj.gov.br/site/conteud... portal, which focused on the campaign to combat the ZikaV, continued to lag: information was out of date or missing.

The Internet is a particularly advantageous medium for spreading information. Government websites should use easy language and tools that are intuitive to lay persons, a diversity of electronic formats and be constantly updated. Information dissemination in a service network should consider local contexts, different realities and obstacles to access to education, to means of communication and to technology. It is important to identify specific needs, increase the proactive publication of important documents and proceed with making those resources public³³33 Paes B. Acesso à informação e direito das mulheres. São Paulo: Artigo 19; 2016..

The manner in which the virtual pathways of the SES/RJ emerge in a search for information on care signal difficulties in the process. The Google search did not return any of the SES/RJ information websites. This suggests that effective communication among managers is lacking and that practice developed without sufficient interaction in order for it to be publicised and shared. The SES/RJ reference sites on the mosquito (Rio Against the Dengue/Rio contra a dengue)³⁴34 Governo do Estado do Rio de Janeiro. 10 Minutos salvam vidas [Internet]; c2019. [acessado 2020 Fev 20]. Disponível em: http://www.10minutossalvamvidas.rj. gov.br/ Site/Conteudo/Default.aspx?
http://www.10minutossalvamvidas.rj. gov.... and Zika and microcephaly (Shoo Zika/Xô Zika)²⁰20 Governo do Estado do Rio de Janeiro. Xô Zika: campanha contra Zika da Secretaria Estadual de Saúde do Rio de Janeiro [Internet]; 2019. [acessado 2020 Fev 20]. Disponível em: http://www.xozika.rj.gov.br/site/conteudo/
http://www.xozika.rj.gov.br/site/conteud... did not point to other portals with information on the care network, such as the site that can be consulted for information on health care centres and its web page on RCPD resources, which contains the addresses of all the institutions. That lack of connectedness seems to have contributed to the overall worsening of the scenario of disinformation on the epidemic.

Final considerations

It can be concluded that information about PHSs from public VSs predominated, with particular emphasis on one diagnostic facility, reflected in its centrality, its power of intermediation and information quality, although most of the mentions were of SC services. Private services were conspicuously isolated and philanthropic services did not dialogue among themselves or with PHSs. Press VSs appeared directly related to indications of PHSs, particularly during the PHEIC period.

SNA allowed a panorama of existing conditions to be visualised, revealing difficulty accessing virtual information on specialised rehabilitation services in RJ, especially those of the RCPD, in addition to pointing to the insufficiency and superficiality of the information offered at the time. SNA showed how relations occurred between actors and also afforded a better understanding of the flow of virtual information about services in the study period. Even though further studies are needed to generalise about the situation encountered here, these initial findings themselves already indicate the importance of establishing the health service network more firmly. They also threw light on paths to be taken towards implementing related policy, so as to offer citizens timely access to therapeutic resources and thus to health promotion. Although gaps were found to exist, the evidence points to the importance of fostering communication by virtual means.

References

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