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1.
Braz. j. biol ; 83: e246040, 2023. tab, graf
Article in English | LILACS, VETINDEX | ID: biblio-1285610

ABSTRACT

Abstract Autosomal recessive primary microcephaly (MCPH) is a neurodevelopmental disorder characterized by a congenitally reduced head circumference (-3 to -5 SD) and non-progressive intellectual disability. The objective of the study was to evaluate pathogenic mutations in the ASPM gene to understand etiology and molecular mechanism of primary microcephaly. Blood samples were collected from various families across different remote areas of Pakistan from February 2017 to May 2019 who were identified to be affected with primary microcephaly. DNA extraction was performed using the salting-out method; the quality and quantity of DNA were evaluated using spectrophotometry and 1% agarose gel electrophoresis, respectively in University of the Punjab. Mutation analysis was performed by whole exome sequencing from the Cologne Center for Genomics, University of Cologne. Sanger sequencing was done in University of the Punjab to confirm the pathogenic nature of mutation. A novel 4-bp deletion mutation c.3877_3880delGAGA was detected in exon 17 of the ASPM gene in two primary microcephaly affected families (A and B), which resulted in a frame shift mutation in the gene followed by truncated protein synthesis (p.Glu1293Lysfs*10), as well as the loss of the calmodulin-binding IQ domain and the Armadillo-like domain in the ASPM protein. Using the in-silico tools Mutation Taster, PROVEAN, and PolyPhen, the pathogenic effect of this novel mutation was tested; it was predicted to be "disease causing," with high pathogenicity scores. One previously reported mutation in exon 24 (c.9730C>T) of the ASPM gene resulting in protein truncation (p.Arg3244*) was also observed in family C. Mutations in the ASPM gene are the most common cause of MCPH in most cases. Therefore, enrolling additional affected families from remote areas of Pakistan would help in identifying or mapping novel mutations in the ASPM gene of primary microcephaly.


Resumo Microcefalia primária autossômica recessiva (MCPH) é um distúrbio do neurodesenvolvimento caracterizado por uma redução congênita do perímetro cefálico (-3 a -5 DP) e deficiência intelectual não progressiva. O objetivo do estudo foi avaliar mutações patogênicas no gene ASPM a fim de compreender a etiologia e o mecanismo molecular da microcefalia primária. Amostras de sangue foram coletadas de várias famílias em diferentes áreas remotas do Paquistão de fevereiro de 2017 a maio de 2019, que foram identificadas como afetadas com microcefalia primária. A extração do DNA foi realizada pelo método salting-out; a qualidade e a quantidade de DNA foram avaliadas por espectrofotometria e eletroforese em gel de agarose a 1%, respectivamente, na Universidade de Punjab. A análise de mutação foi realizada por sequenciamento completo do exoma do Cologne Center for Genomics, University of Cologne. O sequenciamento de Sanger foi feito na Universidade do Punjab para confirmar a natureza patogênica da mutação. Uma nova mutação de deleção de 4 bp c.3877_3880delGAGA foi detectada no exon 17 do gene ASPM em duas famílias afetadas por microcefalia primária (A e B), que resultou em uma mutação de frame shift no gene seguida por síntese de proteína truncada (pGlu1293Lysfs * 10), bem como a perda do domínio IQ de ligação à calmodulina e o domínio do tipo Armadillo na proteína ASPM. Usando as ferramentas in-silico Mutation Taster, PROVEAN e PolyPhen, o efeito patogênico dessa nova mutação foi testado; foi previsto ser "causador de doenças", com altos escores de patogenicidade. Uma mutação relatada anteriormente no exon 24 (c.9730C > T) do gene ASPM, resultando em truncamento de proteína (p.Arg3244 *) também foi observada na família C. Mutações no gene ASPM são a causa mais comum de MCPH na maioria dos casos . Portanto, a inscrição de famílias afetadas adicionais de áreas remotas do Paquistão ajudaria a identificar ou mapear novas mutações no gene ASPM da microcefalia primária.


Subject(s)
Humans , Microcephaly/genetics , Nerve Tissue Proteins/genetics , Pakistan , Consanguinity , Mutation/genetics
2.
Ciênc. Saúde Colet ; 27(3): 861-870, mar. 2022. tab
Article in Portuguese | LILACS | ID: biblio-1364676

ABSTRACT

Resumo A epidemia zika trouxe ao cenário o nascimento de crianças com necessidades desconhecidas e inesperadas que exigem acompanhamento longitudinal, fortalecimento do vínculo, integralidade e coordenação do cuidado, atributos essenciais da atenção primária em saúde (APS). Este artigo tem o objetivo de avaliar a orientação da APS utilizando o instrumento PCATool-Brasil. Os dados foram coletados entre 2016 e 2019 por meio de entrevistas com responsáveis de crianças que nasceram em uma maternidade pública do Recife-PE no período crítico do surto de microcefalia, sobretudo no Nordeste do Brasil. Participaram do inquérito 109 responsáveis, dos quais 15,6% tiveram diagnóstico confirmado de microcefalia para suas crianças. Evidenciou-se a suficiência do grau de afiliação e acesso, mas a insuficiência da coordenação de cuidado, longitudinalidade, integralidade, orientação familiar e comunitária. No contexto da síndrome congênita da zika, esses atributos são imprescindíveis para o cuidado integral de crianças e famílias. A produção de saúde a partir desses domínios depende da orientação dos modelos de atenção e gestão com fortes investimentos estaduais e federal. A defesa da vida depende da capacidade de colocar a vida acima de todas as outras racionalidades.


Abstract The Zika epidemic brought to the fore the birth of children with unknown and unexpected needs that demand longitudinal follow-up, strengthening the bond, comprehensiveness and coordination of care in health, which are essential attributes of primary health care (PHC). This article aims to evaluate the orientation of PHC care, using the PCATool-Brasil. The data were collected between 2016 and 2019, by means of interviews with parents of children who were born in a public maternity hospital in Recife (state of Pernambuco) between October 2015 and February 2016, a critical period of the microcephaly outbreak, especially in the Northeast of Brazil. The parents of 109 children participated in the survey, 15.6% of which had a confirmed microcephaly diagnosis. The degree of affiliation and access was sufficient, but the aspects of coordination of care, longitudinality, comprehensiveness, family and community orientation were insufficient. In the context of congenital Zika syndrome, these attributes are essential for the care of children and families. The fostering of health from these domains depends on the orientation of the models of care and their management with state and federal investments. The defense of life depends on the ability to place life above all other rationalities.


Subject(s)
Humans , Female , Pregnancy , Child , Zika Virus , Zika Virus Infection/congenital , Zika Virus Infection/therapy , Microcephaly/therapy , Microcephaly/epidemiology , Primary Health Care , Brazil/epidemiology
3.
Ciênc. Saúde Colet ; 27(3): 881-894, mar. 2022. tab, graf
Article in English, Portuguese | LILACS | ID: biblio-1364707

ABSTRACT

Resumo A correlação do aumento na incidência de casos de microcefalia em 2015, simultaneamente ao surto do zika vírus, levou ao reconhecimento de uma epidemia pela síndrome congênita pelo vírus zika (SCVZ), que ressaltou as já conhecidas fragilidades nas ações do cuidado em saúde. O objetivo do artigo é analisar a rede virtual de informações sobre a oferta de serviços de saúde para crianças com SCVZ no Rio de Janeiro. A partir da análise de redes sociais, foram coletados dados de fontes virtuais sobre informações de serviços e instituições de atendimento, utilizando o buscador Google, a fim de avaliar as relações entre esses atores em 2018. Os resultados apresentaram uma rede fragmentada, com centralização em fontes virtuais e serviços públicos da atenção secundária e terciária, destacando-se a proximidade das fontes de imprensa com os serviços públicos. Destacou-se também o isolamento dos serviços privados e a não interlocução entre os serviços filantrópicos e os serviços públicos. Além disso, as informações oferecidas mostraram-se insuficientes e superficiais, apesar da lacuna da rede formal de reabilitação. Consequentemente, as evidências apontam para a importância de uma rede bem estabelecida de serviços, bem como a necessidade de fomentar a comunicação por meio de mídias virtuais.


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.


Subject(s)
Humans , Child , Zika Virus , Zika Virus Infection/complications , Zika Virus Infection/therapy , Zika Virus Infection/epidemiology , Microcephaly/epidemiology , Brazil/epidemiology , Social Network Analysis
4.
Article in Chinese | WPRIM | ID: wpr-928429

ABSTRACT

OBJECTIVE@#To detect potential mutation of the ASPM gene in a Chinese pedigree affected with autosomal recessive primary microcephaly 5 (MCPH5).@*METHODS@#Peripheral venous blood samples were collected from the proband and her parents. Amniotic fluid sample was also collected upon her mother' s subsequent pregnancy. Following extraction of genomic DNA, PCR and Sanger sequencing were carried out to identify potential variants of the ASPM gene.@*RESULTS@#The proband was found to harbor compound heterozygous variants of the ASPM gene, namely c.8214dupT (p.Q2739fs) in exon 18 and c.9541C>T (p.R3181X) in exon 23, which were respectively inherited from her father and mother. The fetus has found to have inherited the c.9541C>T (p.R3181X) variant only.@*CONCLUSION@#The c.8214dupT (p.Q2739fs) and c.9541C>T (p.R3181X) compound heterozygous variants of the ASPM gene probably underlay the pathogenesis of MCPH5 in this patient. Above finding has enabled genetic counseling and prenatal diagnosis for her family.


Subject(s)
China , Counseling , Female , Humans , Microcephaly , Mutation , Nerve Tissue Proteins/genetics , Pedigree , Pregnancy
5.
Article in Chinese | WPRIM | ID: wpr-928379

ABSTRACT

OBJECTIVE@#To identify pathogenic variants in two patients with suspected for Mowat-Wilson syndrome (MWS).@*METHODS@#Genomic DNA was extracted from peripheral blood samples of the patients and his family members, and gene variants were analysis by Trio-whole exome sequences and copy number variation sequencing.@*RESULTS@#Patient 1 was found to carried a de novo heterozygous c.2769C>A (p.Y923*) nonsense variant of ZEB2 gene. The variant was not found in his healthy parents and sister. Patient 2 carried a de novo heterozygous frameshift variant of the ZEB2 gene, namely c.315delC (p.A105Afs*3), which has not been previously reported. Both variants were predicted to be pathogenic and can lead to premature occurrence of stop codons.@*CONCLUSION@#The heterozygous c.2769C>A (p.Y923*) and c.315delC (p.A105Afs*3) variants of the ZEB2 gene probably underlay the pathogenesis in the two patients. Gene testing has facilitated confirmation of the diagnosis and genetic counselling.


Subject(s)
DNA Copy Number Variations , Facies , Hirschsprung Disease , Humans , Intellectual Disability/genetics , Microcephaly/genetics , Zinc Finger E-box Binding Homeobox 2/genetics
6.
Acta Paul. Enferm. (Online) ; 35: eAPE02912, 2022. tab
Article in Portuguese | LILACS, BDENF | ID: biblio-1364235

ABSTRACT

Resumo Objetivo Compreender o papel das redes de apoio no cuidado de crianças acometidas pela Síndrome Congênita pelo Vírus Zika. Métodos Estudo qualitativo, realizado em Centro de Referência Estadual em Neurodesenvolvimento, no nordeste brasileiro, entre abril de 2017 e fevereiro de 2018. Participaram pais de crianças com microcefalia atendidos no local. Foram realizadas 18 entrevistas semiestruturadas, sendo três com pai e mãe e 15 somente com mães, totalizando 21 participantes. A amostra foi definida pelo critério de saturação e foi utilizada análise de conteúdo na modalidade temática. Resultados Os resultados são apresentados a partir das categorias de análise "rede informal" e "rede formal". A rede de apoio informal, especialmente os avós, exerceu importante suporte emocional e financeiro aos pais. As redes sociais virtuais se destacaram como espaço de compartilhamento de informações e experiências. Quanto à rede de apoio formal, as famílias estabeleceram vínculos mais fortes com profissionais da atenção especializada que ofertaram suporte técnico e acolhimento aos pais e às crianças. Já a atenção primária desempenhou mais o papel de encaminhamento para a atenção especializada. Foram relatados diferentes graus de resolutividade por parte dos municípios, em termos de programas, de atuação de gestores e de profissionais. Conclusão As redes informais e formais atuaram de modo complementar no tratamento e apoio às crianças com Síndrome Congênita pelo Vírus Zika. A inserção em diferentes redes informais possibilitou apoio social para enfrentar o impacto provocado pela doença. Apesar do investimento do Ministério da Saúde na atenção primária foi identificada fragilidade neste nível de atenção.


Resumen Objetivo Comprender el papel de las redes de apoyo en el cuidado de niños afectados por el síndrome congénito por el virus del zika. Métodos Estudio cualitativo, realizado en un Centro de Referencia Regional en Neurodesarrollo, en el nordeste brasileño, entre abril de 2017 y febrero de 2018. Participaron padres de niños con microcefalia atendidos en el lugar. Se realizaron 18 entrevistas semiestructuradas, de las cuales tres fueron con el padre y la madre y 15 solo con madres, un total de 21 participantes. La muestra fue definida por el criterio de saturación y se utilizó análisis de contenido en la modalidad temática. Resultados Los resultados se presentan a partir de las categorías de análisis "red informal" y "red formal". La red de apoyo informal, especialmente los abuelos, ejerció un importante soporte emocional y financiero para los padres. Las redes sociales virtuales se destacaron como un espacio para compartir información y experiencias. Respecto a la red de apoyo formal, las familias establecieron vínculos más fuertes con profesionales de la atención especializada, que ofrecieron soporte técnico y acogida a los padres y a los niños. Por otro lado, la atención primaria cumplió más el papel de derivar a la atención especializada. Se relataron diferentes niveles de resolución de problemas por parte de los municipios, en términos de programas, de actuación de gestores y de profesionales. Conclusión Las redes informales y formales actuaron de modo complementario en el tratamiento y apoyo a niños con síndrome congénito por el virus del zika. La inserción en diferentes redes informales permitió un apoyo social para enfrentar el impacto provocado por la enfermedad. A pesar de las inversiones en atención primaria del Ministerio de Salud, se identificó fragilidad en este nivel de atención.


Abstract Objective To understand the role of support networks in the care of children affected by Congenital Zika Syndrome. Methods This is a qualitative study, conducted at a State Reference Center on Neurodevelopment, in northeastern Brazil, between April 2017 and February 2018. Parents of children with microcephaly treated at the site participated. 18 semi-structured interviews were conducted, three with father and mother and 15 only with mothers, totaling 21 participants. The sample was defined by the saturation criterion and content analysis was used in the thematic modality. Results The results are presented from the categories of analysis "informal network" and "formal network". The informal support network, especially grandparents, exercised important emotional and financial support to parents. Virtual social networks stood out as a space for sharing information and experiences. Regarding the formal support network, the families established stronger bonds with specialized care professionals who offered technical support and care to parents and children. Primary care, on the other, played the role of referral to specialized care. Different degrees of resolution were reported by the municipalities, in terms of programs, the performance of managers and professionals. Conclusion Formal and formal networks acted in a complementary way in the treatment and support of children with Congenital Zika Syndrome. The insertion in different indirect networks allowed social support to face the impact caused by the disease. Despite the ministry of health's investment in primary care, fragility was identified in this level of care.


Subject(s)
Humans , Male , Female , Infant, Newborn , Infant , Adolescent , Adult , Social Support , Caregivers , Zika Virus Infection/congenital , Microcephaly/diagnosis , Interviews as Topic , Delivery of Health Care , Psychosocial Support Systems
7.
J. pediatr. (Rio J.) ; 97(4): 433-439, July-Aug. 2021. tab, graf
Article in English | LILACS | ID: biblio-1287047

ABSTRACT

Abstract Objective We sought to describe the prevalence of microcephaly and to compare the different cutoff points established by the Brazilian Ministry of Health at various times during a Zika virus epidemic. As a secondary aim, we investigated the possible etiology of the microcephaly. Method This retrospective study utilized newborn participants in the Zika Cohort Study Jundiaí. Newborns from the Zika Cohort Study Jundiaí with an accurate gestational age determination and complete anthropometric data were analyzed, and microcephaly was diagnosed according to the INTERGROWTH-21st curve. At delivery, fluids were tested for specific antibodies and for viruses. Brain images were evaluated for microcephaly. Receiver Operating Characteristic curves were plotted to define the accuracy of different cutoff points for microcephaly diagnosis. Results Of 462 eligible newborns, 19 (4.1%) were positive for microcephaly. Cutoff points corresponding to the curves of the World Health Organization yielded the best sensitivity and specificity. Three of the microcephaly cases (15.8%) were positive for Zika virus infections; nine (47.4%) had intrauterine growth restriction; one had intrauterine growth restriction and was exposed to Zika virus; three had a genetic syndrome (15.8%); and three had causes that had not been determined (15.8%). Conclusions Microcephaly prevalence was 4.1% in this study. Cutoff values determined by the World Health Organization had the highest sensitivity and specificity in relation to the standard IG curve. The main reason for microcephaly was intrauterine growth restriction. All possible causes of microcephaly must be investigated to allow the best development of an affected baby.


Subject(s)
Humans , Female , Pregnancy , Infant , Child, Preschool , Child , Pregnancy Complications, Infectious/diagnosis , Pregnancy Complications, Infectious/epidemiology , Zika Virus , Zika Virus Infection/complications , Zika Virus Infection/diagnosis , Zika Virus Infection/epidemiology , Brazil/epidemiology , Prevalence , Cross-Sectional Studies , Retrospective Studies , Cohort Studies , Microcephaly/epidemiology
8.
Ciênc. Saúde Colet ; 26(6): 2271-2280, jun. 2021.
Article in Portuguese | LILACS | ID: biblio-1278696

ABSTRACT

Resumo Em 2015, no Brasil, houve uma epidemia de microcefalia que foi associada à infecção pelo vírus Zika. A condição destas crianças impulsionou os pais a percorrerem um caminho em busca por tratamento. O objetivo deste estudo foi conhecer o itinerário terapêutico percorrido por pais e/ou cuidadores de crianças com microcefalia pelo vírus Zika nos setores de atenção à saúde. Pesquisa de abordagem qualitativa, realizada em um Centro de Referência em Neurodesenvolvimento, no período de abril de 2017 a fevereiro de 2018, com pais e/ou cuidadores de crianças com microcefalia pelo vírus Zika. A amostra obedeceu aos critérios de saturação de sentidos. Foram feitas 20 entrevistas semiestruturadas, gravadas e transcritas. Realizou-se análise de conteúdo, na modalidade temática. Os resultados demostraram desorientação e incertezas na busca pelo cuidado nos setores de saúde. O setor mais procurado foi o profissional, seguido pelo informal e popular. As informações veiculadas na mídia e redes sociais, que fazem parte do setor informal, contribuíram para esclarecer o significado da microcefalia e vírus Zika e auxiliou na busca por tratamento. O cuidado na rede de Atenção à Saúde foi marcado pela peregrinação. Diante de uma situação nova e emergencial, o caminho percorrido, entre o diagnóstico e o tratamento, foi árduo.


Abstract In 2015, there was an epidemic of microcephaly in Brazil that was associated with infection by the Zika virus. The condition of these children obliged the parents to embark on a quest in search of treatment. The scope of this study was to establish the therapeutic itinerary pursued in healthcare sectors by parents and/or caregivers of children with microcephaly due to the Zika virus. It involved qualitative research, conducted at a Center of Reference on Neurodevelopment between April 2017 and February 2018, with parents and/or caregivers of children with microcephaly caused by the Zika virus. The sample complied with the criteria of saturation. Twenty semi-structured interviews were conducted, recorded, and transcribed, and content analysis was applied. The results revealed disorientation and uncertainties in the search for care in the health sector. The most sought-after sector was the professional sector, followed by the informal sector. The information conveyed in the media and social networks, which constitute part of the informal sector, helped to clarify the significance of microcephaly and the Zika virus and assisted in the search for treatment. Care in the healthcare network was marked by difficulties and, faced with a new and emergency situation, the route between diagnosis and treatment was arduous.


Subject(s)
Humans , Female , Pregnancy , Child , Pregnancy Complications, Infectious , Zika Virus , Zika Virus Infection/complications , Zika Virus Infection/epidemiology , Microcephaly/epidemiology , Brazil/epidemiology
9.
RECIIS (Online) ; 15(2): 301-318, abr.-jun. 2021.
Article in Portuguese | LILACS | ID: biblio-1254690

ABSTRACT

A epidemia de Zika vírus que assolou o Brasil no final de 2015 trouxe desafios e graves consequências para a população em diferentes regiões e contextos, assumindo destaque na cobertura midiática à época. As mulheres, sobretudo as gestantes e mães, foram fortemente impactadas pela epidemia, principalmente após a comprovação da relação entre a infecção pelo Zika e o nascimento de bebês com microcefalia. Apesar disso, essas mulheres foram invisibilizadas na cobertura midiática da emergência sanitária, tendo sido pouco ouvidas sobre um tema que afeta(va) diretamente as suas vivências e as de seus filhos e filhas. Nesse sentido, o artigo reflete sobre a fala pública das mulheres, com base em discussões da teoria política feminista e da análise empírica de dois espaços de comunicação on-line: o jornal Folha de S.Paulo e a página de Facebook de uma associação de mulheres, a União de Mães de Anjos (UMA). Observamos como diversos silenciamentos se fazem presentes nos espaços midiáticos, como as dinâmicas do cuidado se manifestam e são permeadas por quadros de desigualdade, e como as resistências, apesar desses cenários, se constroem cotidianamente entre mulheres.


The Zika virus epidemic that hit Brazil at the end of 2015 brought challenges and serious consequences for the population in different regions and contexts of the country, gaining prominence in the media coverage at the time. Women, especially pregnant women and mothers, were strongly affected by the epidemic, especially after the confirmation of the relationship between Zika infection and the birth of babies with microcephaly. Despite this, these women were made invisible in the media coverage of the health emergency, having been not enough heard about a topic that directly affects their experiences and those of their sons and daughters. In this sense, the article reflects on the public speech of women, based on discussions of feminist political theory and the empirical analysis of two online communication spaces: the Folha de S.Paulo newspaper and the Facebook page of a women's association, the União de Mães de Anjos (UMA). We observed how different silences are present in the media spaces, how the dynamics of care are manifested and are permeated by situations of inequality, and how resistance, despite these scenarios, is built daily among women.


La epidemia del virus Zika que afectó a Brasil a finales de 2015 trajo desafíos y graves consecuencias para la población en diferentes regiones y contextos, asumiendo protagonismo en la cobertura mediática de la época. Las mujeres, especialmente las embarazadas y las madres, fueron fuertemente afectadas por la epidemia, especialmente después que fue probada la relación entre la infección por Zika y el nacimiento de bebés con microcefalia. Pese a ello, estas mujeres quedaron invisibilizadas en la cobertura mediática de la emergencia sanitaria, habiendo sido poco escuchadas sobre un tema que afecta directamente sus vivencias y las de sus hijos e hijas. En este sentido, el artículo reflexiona sobre el discurso público de las mujeres, a partir de discusiones de la teoría política feminista y el análisis empírico de dos ámbitos de la comunicación online: el periódico Folha de S.Paulo y la página de Facebook de una asociación de mujeres, la União de Mães de Anjos (UMA). Observamos como los diferentes silencios están presentes en los espacios mediáticos, como las dinámicas del cuidado se manifiestan y están permeadas por situaciones de desigualdad, y como la resistencia, a pesar de estos escenarios, se construye diariamente entre las mujeres.


Subject(s)
Humans , Women , Internet , Journalism , Zika Virus , Microcephaly , Brazil , Feminism , Pregnant Women , Gender Inequality
10.
Aquichan ; 21(1): e2117, Abr. 8, 2021.
Article in English | LILACS, BDENF, COLNAL | ID: biblio-1283780

ABSTRACT

Objetivo: entender a organização da Rede de Atenção à Saúde (RAS) a partir de vivências de mães e de familiares no processo assistencial para o diagnóstico de microcefalia. Materiais e métodos: pesquisa descritiva e exploratória, de abordagem qualitativa, realizada com 14 mães de crianças com microcefalia. Para a definição da amostra, foram elencados os seguintes critérios de inclusão: ser mãe de criança diagnosticada com microcefalia decorrente do zika vírus, ter parido e ser residente do município de Mossoró, Rio Grande do Norte, Brasil. Enquanto critérios de exclusão, foram especificados: mães que não aceitaram participar do estudo. A população desta investigação foi definida no ano de 2018. Para a análise dos dados, foi empregado o método da análise temática do conteúdo de Minayo. Resultados: os resultados foram divididos nas seguintes categorias: 1. acesso aos serviços, aos exames e ao acompanhamento profissional; 2. percepção das mães acerca do seguimento na RAS. Foi possível apreender os obstáculos vivenciados na RAS para o diagnóstico e o seguimento das crianças com síndrome congênita decorrente do zika vírus. Conclusões: evidenciou-se a dificuldade de operacionalização de protocolo proposto para a RAS quer seja pelo conhecimento insuficiente acerca da síndrome, impossibilitando a manutenção do fluxo organizacional estabelecido pelo protocolo, quer seja pela escassez de tecnologias duras que auxiliem na efetivação dessa assistência.


Objective: To understand the organization of the Health Care Network (Rede de Atenção à Saúde, RAS) from the experiences of mothers and family members in the assistance process for the diagnosis of microcephaly. Materials and methods: A descriptive and exploratory research study with a qualitative approach, conducted with 14 mothers of children with microcephaly. For the definition of the sample, the following inclusion criteria were listed: being a mother of a child diagnosed with microcephaly due to Zika Virus, having given birth, and being a resident of the municipality of Mossoró, Rio Grande do Norte, Brazil. Regarding the exclusion criterion, the following was specified: mothers who did not accept to participate in the study. The population of this research was defined in 2018. Minayo's method of thematic content analysis was employed for data analysis. Results: The results were divided into the following categories: 1. Access to the services, exams, and professional monitoring; 2. Perception of the mothers about follow-up in the RAS. It was possible to apprehend the obstacles experienced in the RAS for the diagnosis and follow-up of children with congenital syndrome due to the Zika Virus. Conclusions: The difficulty of operationalizing the proposed protocol for the RAS was evidenced, either due to insufficient knowledge about the syndrome, making it impossible to maintain the organizational flow established by the protocol, or to the scarcity of hard technologies that assist in the implementation of this assistance.


Objetivo: entender la organización de la Red de Atención a la Salud (RAS) desde vivencias de madres y de familiares en el proceso asistencial para el diagnóstico de microcefalia. Materiales y métodos: investigación descriptiva y exploratoria, de enfoque cualitativo, realizado con 14 madres de niños con microcefalia. Para definir la muestra, se consideraron los siguientes criterios de inclusión: ser madre de niño diagnosticado con microcefalia resultante del virus zika, haber parido y ser residente del municipio de Mossoró, Rio Grande do Norte, Brasil. Como criterios de exclusión, se especificaron: madres que no aceptaron a participar en el estudio. La población del estudio se definió en el 2018. Para analizar los datos, se empleó el método de análisis temático de contenido de Minayo. Resultados: los resultados se dividieron en las categorías: 1. acceso a los servicios, a las pruebas y al seguimiento profesional; 2. percepción de las madres acerca del seguimiento en la RAS. Se logró aprehender los obstáculos vivenciados en la RAS para o diagnóstico y el seguimiento de los niños con síndrome congénito resultante del virus zika. Conclusiones: se evidenció la dificultad de operacionalización de protocolo propuesto para la RAS, ya sea por el conocimiento insuficiente acerca del síndrome, imposibilitando el mantenimiento del flujo organizacional establecido por el protocolo, ya sea por la escasez de tecnologías duras que auxilien en la efectuación de esta asistencia.


Subject(s)
Nursing , Delivery of Health Care , Diagnosis , Zika Virus , Microcephaly
11.
Arq. ciências saúde UNIPAR ; 25(1): 37-42, jan-abr. 2021.
Article in Portuguese | LILACS | ID: biblio-1151406

ABSTRACT

As infecções ocasionadas pelos vírus da Dengue (DENV), Zika (ZIKV) e Chikungunya (CHIKV) em gestantes são de grande preocupação pelos possíveis danos causados pelos mesmos às mães e fetos. O ZIKV está relacionado à microcefalia e outras anomalias cerebrais graves em neonatos e a infecção por CHIKV em gestantes no período intraparto pode levar à transmissão vertical, com possibilidade de agravamento no quadro do neonato. E, apesar de ainda não haver relatos de ocorrência de malformações congênitas associadas à infecção por DENV em gestantes, as mesmas são consideradas um grupo de risco, pois apresentam maiores chances de evolução para formas graves ou óbito e aumento no risco de partos prematuros decorrente da infecção materna perinatal. Neste estudo, foi realizada uma análise retrospectiva dos resultados envolvendo os vírus DENV, ZIKV e CHIKV para determinar a taxa de positividade destas arboviroses em gestantes no município de São José do Rio Preto-SP, nos anos de 2018 e 2019. Para isso, foram coletados resultados de PCR em tempo real (RT-PCR) para DENV, ZIKV e CHIKV de amostras de soro e urina obtidas de 557 gestantes com histórico de febre, bem como 93 amostras de recém-nascidos (RN). Na análise dos resultados foi verificado que o sorotipo-2 de Dengue (DENV-2) foi detectado em 106/557 correspondendo a 19% das amostras, o sorotipo-1 (DENV-1) foi detectado em apenas uma amostra e o ZIKV foi detectado em duas amostras. CHIKV não foi detectado. Não foi detectado arbovírus nas amostras de RN testadas pela técnica de RT-PCR. Quanto à idade, 40% das gestantes pertenciam à faixa etária de 25 a 32 anos, seguidas pelas faixas de 33 a 40 anos e 17 a 24 anos com percentuais de 31 e 29%, respectivamente. No período, uma gestante que estava na 13ª semana de gestação foi a óbito por DENV-2. Os resultados obtidos evidenciam a importância do diagnóstico precoce das arboviroses neste grupo, viabilizando a assistência adequada às gestantes. Nesse sentido, o monitoramento da circulação simultânea de arboviroses responsáveis por causarem complicações em gestantes e infecções congênitas deve continuar em áreas endêmicas como a de São José do Rio Preto, visando um diagnóstico materno precoce e manejo adequado de gestantes testadas positivas verificando a presença de sinais de alerta e de dengue grave.


Infections caused by Dengue (DENV), Zika (ZIKV) and Chikungunya (CHIKV) viruses in pregnant women represent great concern because of the possible damage that can be caused by these viruses to both mothers and fetuses. ZIKV is related to microcephaly and other severe brain abnormalities in neonates, while CHIKV infection in pregnant women in the intrapartum period can lead to vertical transmission, with the possibility of worsening in the neonate. And although there are no reports of congenital malformations associated with DENV infection in pregnant women, they are also considered of risk group, since they have greater probability to progress to severe forms or even death. In addition, there is an increased risk of premature childbirth. In this study, a retrospective result analysis involving DENV, ZIKV and CHIKV viruses was carried out to determine the positivity rate of those arboviruses in pregnant women in the city of São José do Rio Preto-SP, in the years 2018 and 2019. For this purpose, real-time PCR results (RT-PCR) were collected for DENV, ZIKV and CHIKV from serum and urine samples obtained from 557 pregnant women with a history of fever, as well as samples from 93 newborns (NB). Dengue serotype-2 (DENV-2) was detected in 106/557, which corresponds to 19% of the samples; dengue serotype-1 (DENV-1) was detected in only one sample, and the ZIKV was detected in two samples. CHIKV was not detected. Arboviruses were not detected in the NB samples tested by the RT-PCR technique. In relation to age groups, 40% of pregnant women were between 25 to 32 years old, followed by the groups of 33 to 40 years old, and 17 to 24 years old, with 31% and 29%, respectively. In the period, a pregnant woman who was in the 13th week of pregnancy died due to DENV-2. The results obtained emphasize the importance of the early diagnosis of arboviruses in this group, thus enabling adequate assistance to pregnant women. In this sense, the monitoring of arboviruses circulation responsible for causing complications and congenital infections in pregnant women should continue in endemic areas such as São José do Rio Preto, aiming at an early maternal diagnosis and adequate management of the patients who tested positive, checking for the presence of any alert signs and severe dengue.


Subject(s)
Humans , Female , Pregnancy , Adult , Arbovirus Infections , Pregnant Women , Infant, Newborn/growth & development , Chikungunya virus , Dengue/complications , Early Diagnosis , Zika Virus , Zika Virus Infection/complications , Vector Borne Diseases/virology , Microcephaly/virology
12.
RECIIS (Online) ; 15(1): 280-288, jan.-mar. 2021. ilus
Article in Portuguese | LILACS | ID: biblio-1177457

ABSTRACT

O documentário Todo cuidado do mundo aborda histórias de mulheres, mães de filhos portadores da microcefalia congênita, malformação oriunda da contaminação de gestantes pelo Zika vírus. A expansão do Zika vírus e suas consequências para as gestantes são abordadas nesse documentário, que focaliza o impacto social gerado pelo vírus especialmente na vida das mães que possuem filhos portadores da microcefalia. Para além da realidade maternal, o vídeo apresenta a opinião de profissionais de saúde e problematiza a questão em torno da microcefalia congênita e seu impacto no direito à saúde. As discussões sobre as necessidades que têm as mães de filhos portadores da microcefalia e os apoios de que elas precisam, contribuem para sensibilizar o público sobre os desafios enfrentados por elas.


The documentary Todo cuidado do mundo (Every care in the world) addresses daily events in the life of women, mothers of children with congenital microcephaly, malformation resulting from contamination of pregnant women by Zika virus. The expansion of the Zika virus and its consequences for pregnant women are addressed in the documentary, which focuses on the social impact generated by that virus especially on the life of mothers who have children with microcephaly. In addition to the maternal reality, the video presents the opinion of health professionals and discusses the issue surrounding congenital microcephaly and its impact on the right to health. Discussions about the support that mothers of children with microcephaly require and their daily needs contribute to sensitize the public to the challenges faced by them.


El documental Todo cuidado do mundo (Todos los cuidados del mundo) aborda historias de mujeres, madres de niños con microcefalia congénita, malformación resultante de la contaminación, por el virus Zika, de mujeres embarazadas. La expansión del virus Zika y sus consecuencias para las mujeres embarazadas son abordadas en el documental, que enfoca el impacto social generado por el virus especialmente en la vida de las madres que tienen hijos con microcefalia. Además de la realidad materna, el vídeo presenta la opinión de los profesionales de la salud y discute el tema de la microcefalia congénita y su impacto en el derecho a la salud. Las discusiones sobre los apoyos que precisan las madres de niños con microcefalia y suyas necesidades diarias contribuyen para sensibilizar al público acerca de los desafíos que ellas enfrentan.


Subject(s)
Humans , Female , Pregnancy , Infant, Newborn , Infant , Adult , Brazil , Documentaries and Factual Films , Zika Virus , Microcephaly/history , Mother-Child Relations , Pregnancy , Right to Health , Mothers/history
13.
Article in Chinese | WPRIM | ID: wpr-921982

ABSTRACT

OBJECTIVE@#To analyze the clinical phenotype and pathogenic variant in a child diagnosed with mental retardation and microcephaly with pontine and cerebellar hypoplasia (MICPCH).@*METHODS@#Clinical phenotype of the child was reviewed. Whole exome sequencing was carried out for the child. Candidate variant was verified by Sanger sequencing of the family member.@*RESULTS@#The proband manifested dyskinesia, development delay, cerebellar hypoplasia and bilateral hearing impairment. WES results revealed that the proband has carried a pathogenic c.1641_1644delACAA (p.Thr548Trpfs*69) variant of the CASK gene, which was verified by Sanger sequencing to be a de novo variant.@*CONCLUSION@#The c.1641_1644delACAA (p.Thr548Trpfs*69) variant of the CASK gene probably underlay the MICPCH in the proband. Above finding has provided a basis for genetic counseling. WES should be considered for the diagnosis of neurological dysplasia.


Subject(s)
Cerebellum/abnormalities , Child , Developmental Disabilities , Family , Humans , Mental Retardation, X-Linked , Microcephaly/genetics , Nervous System Malformations
14.
Article in Chinese | WPRIM | ID: wpr-921979

ABSTRACT

OBJECTIVE@#Two brothes with Seckel's syndrome 1(SCKL1) were reported and a literature review was carried to provide clinical and genetic information of this rare disease.@*METHODS@#Clinical data of the two children were collected, and the peripheral blood was extracted for whole exome sequencing. Literature of the disease were reviewed.@*RESULTS@#The two patients were 11 years and 9.5 years old when examined for short stature. They presented with intrauterine growth retardation, intellectual disability, microcephaly, birdhead-like face and coffee au lait spots. The bone age was more than 2 years behind the chronical age and the growth hormone levels were normal. Whole exome sequencing revealed novel compound heterozygous variants c.1A>G (p.M1?) and c.4853-18A>G of ART gene in both children.@*CONCLUSION@#Children with prenatal onset short stature, developmental delay, microcephaly and special facial featuresshould be considered for the possibility of Seckel's syndrome, whole exome sequencing could help to confirm the clinical diagnosis.


Subject(s)
Ataxia Telangiectasia Mutated Proteins/genetics , Child , Dwarfism/genetics , Humans , Intellectual Disability/genetics , Male , Microcephaly/genetics , Siblings , Whole Exome Sequencing
15.
Article in Chinese | WPRIM | ID: wpr-879604

ABSTRACT

OBJECTIVE@#To summarize the clinical phenotype and genotype of a Chinese child affected with Mowat-Wilson syndrome (MWS).@*METHODS@#Clinical data of the patient were collected. The patient was analyzed by whole-exome sequencing (WES) as well as Sanger sequencing.@*RESULTS@#The patient was a male infant with recurrent fever and slow growth. He also had characteristic facies, recurrent spasm, and growth retardation. WES revealed that he has carried a heterozygous nonsense c.2609C>G (p.Ser870X) variant of the ZEB2 gene (30% mosaicism). Based on the American College of Medical Genetics and Genomics standards and guidelines, the variant was predicted to be pathogenic (PVS1+PS1+PS2+PM2).@*CONCLUSION@#The c.2609C>G variant of the ZEB2 gene probably underlay the MWS in this child. The mosaicism of the variant may explain his mild symptoms.


Subject(s)
Child , Facies , Hirschsprung Disease/genetics , Humans , Infant , Intellectual Disability/genetics , Male , Microcephaly/genetics , Mutation
16.
Article in Chinese | WPRIM | ID: wpr-879548

ABSTRACT

OBJECTIVE@#To explore the genetic basis for a child with ocular anomaly, microcephaly, growth retardation and intrauterine growth restriction.@*METHODS@#The patient underwent ophthalmologic examinations including anterior segment photography, fundus color photography, and fundus fluorescein angiography. The patient and her parents were subjected to whole exome sequencing. Candidate variants were verified by Sanger sequencing and bioinformatic analysis.@*RESULTS@#The patient was found to have bilateral persistent pupillary membrane and coloboma of inferior iris, in addition with macular dysplasia and radial pigmentation near the hemal arch of the temporal retina. She was found to have carried compound heterozygous missense variants of the PHGDH gene, namely c.196G>A and c.1177G>A, which were respectively inherited from her father and mother. Bioinformatic analysis suggested both variants to be pathogenic.@*CONCLUSION@#The patient was diagnosed with phosphoglycerate dehydrogenase deficiency. Above finding has enriched the phenotypic spectrum of the disease with ocular manifestations.


Subject(s)
Carbohydrate Metabolism, Inborn Errors/genetics , Child , Coloboma , Female , Humans , Microcephaly/genetics , Mutation , Phenotype , Phosphoglycerate Dehydrogenase/genetics , Psychomotor Disorders/genetics , Seizures/genetics , Whole Exome Sequencing
17.
Article in English | LILACS, SES-SP | ID: biblio-1136744

ABSTRACT

ABSTRACT Objective: To investigate how mothers of children with congenital syndrome (microcephaly) associated with Zika virus perceive their quality of life. Methods: This is a qualitative study carried out in two stages: at the Maternal and Child University Hospital and at Casa de Apoio Ninar through semi-structured interviews with mothers of children with congenital syndrome associated with Zika virus. Ten women comprised the sample. Results: In line with the critical discourse analysis, four categories emerged based on Fairclough's 2008 assumptions: Quality of Life and Health - quality of life perception associated with the broad meaning of the term health; Quality of Life and Health Care Systems - characterized by care instability and fragmentation; Quality of Life and Free Time - lack of free time for activities of daily living and leisure; Quality of Life and Future Perspectives - lack of future perspective, considering that most participants had to stop working and studying to take care of their children. Conclusions: Mothers of children with congenital syndrome associated with Zika virus are devoted to their children's care. Their lack of prospects was considered a consequence of the lack of time for activities of daily living and leisure.


RESUMO Objetivo: Investigar a percepção da qualidade de vida das mães de crianças portadoras de síndrome congênita (microcefalia) associada ao Zika vírus. Métodos: Trata-se de um estudo qualitativo realizado em duas etapas. A primeira foi conduzida no Hospital Universitário Materno-Infantil e a segunda na Casa de Apoio Ninar, por meio de entrevista semiestruturada com mães de crianças que apresentam a síndrome congênita associada ao Zika vírus. A amostra foi composta por 10 mulheres. Resultados: Em consonância com a análise crítica do discurso, segundo os pressupostos de Fairclough, de 2008, quatro categorias emergiram: Qualidade de Vida e Saúde - a percepção da qualidade de vida está vinculada ao significado amplo do termo saúde; Redes de Qualidade de Vida e Atenção à Saúde - caracterizadas por precariedade e fragmentação do cuidado; Qualidade de Vida e Tempo Livre - falta de tempo livre para realizar atividades da vida diária e lazer; Qualidade de Vida e Perspectivas Futuras - foi abordada a falta de perspectiva futura, uma vez que a maioria das participantes teve que parar de trabalhar e estudar para cuidar dos filhos. Conclusões: Mães de crianças com síndrome congênita associada ao vírus Zika são totalmente dedicadas ao cuidado de seus filhos. A falta de perspectivas para o futuro foi considerada em decorrência da falta de tempo para lazer e atividade da vida diária.


Subject(s)
Humans , Male , Female , Infant, Newborn , Infant , Child , Adult , Young Adult , Quality of Life , Zika Virus Infection/complications , Microcephaly/psychology , Mothers/psychology , Syndrome , Qualitative Research , Microcephaly/etiology
18.
Frontiers of Medicine ; (4): 404-415, 2021.
Article in English | WPRIM | ID: wpr-888734

ABSTRACT

Zika virus (ZIKV) is an emerging pathogen associated with neurological complications, such as Guillain-Barré syndrome in adults and microcephaly in fetuses and newborns. This mosquito-borne flavivirus causes important social and sanitary problems owing to its rapid dissemination. However, the development of antivirals against ZIKV is lagging. Although various strategies have been used to study anti-ZIKV agents, approved drugs or vaccines for the treatment (or prevention) of ZIKV infections are currently unavailable. Repurposing clinically approved drugs could be an effective approach to quickly respond to an emergency outbreak of ZIKV infections. The well-established safety profiles and optimal dosage of these clinically approved drugs could provide an economical, safe, and efficacious approach to address ZIKV infections. This review focuses on the recent research and development of agents against ZIKV infection by repurposing clinical drugs. Their characteristics, targets, and potential use in anti-ZIKV therapy are presented. This review provides an update and some successful strategies in the search for anti-ZIKV agents are given.


Subject(s)
Adult , Animals , Drug Repositioning , Humans , Infant, Newborn , Microcephaly , Pharmaceutical Preparations , Zika Virus , Zika Virus Infection/prevention & control
19.
Psicol. ciênc. prof ; 41(spe3): e193951, 2021. tab
Article in Portuguese | LILACS, INDEXPSI | ID: biblio-1340447

ABSTRACT

A microcefalia é uma condição neurológica que afeta o tamanho do perímetro cefálico. Nesta pesquisa qualitativa e descritiva, buscou-se avaliar como a mãe lida com o bebê real, identificando processos de reconstrução das idealizações maternas. Os instrumentos utilizados foram questionário sociodemográfico e entrevista semiestruturada gravada. A coleta foi realizada em três municípios do interior da Paraíba, nos domicílios de seis mães de microcéfalos com até um ano de idade. Os dados coletados no conteúdo emergente na fala das entrevistadas passaram pela análise temático categorial com suporte teórico psicanalítico. Foram identificadas nove categorias: a) reações ao diagnóstico; b) luto do bebê idealizado; c) elaboração do luto e mecanismos de enfrentamento; d) formas de lidar com o bebê e maternagem; e) dinâmica familiar após a descoberta da microcefalia; f) preconceito; g) atendimento focado em aspectos biológicos e físicos; h) acompanhamento psicológico e acolhimento; i) e suporte social. A mãe é abalada nos aspectos psicológicos e sociais. Os resultados mostram que a espiritualidade, o apoio familiar e de outras mães que vivenciam a mesma situação são formas de enfrentamento. O suporte social mais significativo é exercido pelas mães de outras crianças com microcefalia, com as quais as entrevistadas passaram a conviver em meio ao tratamento interdisciplinar dos filhos. O profissional de psicologia tem um papel fundamental na família que enfrenta a microcefalia, fortalecendo a maternagem, potencializando as forças da mãe para lidar com a desilusão e auxiliando-a na reorganização e adaptação a esse bebê com deficiências múltiplas, o que proporciona a reconstrução de suas idealizações.(AU)


Microcephaly is a neurological condition that affects child's head circumference. This qualitative descriptive research sought to evaluate how mothers of child with microcephaly deal with the real baby, identifying reconstruction processes of maternal idealizations. A sociodemographic questionnaire and a recorded semi-structured interview were conducted with the mothers of six babies born with microcephaly of up to one year of age from three municipalities of the countryside of Paraíba. With psychoanalytical theoretical support, data underwent categorical thematic analysis and resulted in nine categories: a) reactions to diagnosis; b) grief over the idealized baby; c) grief elaboration and coping mechanisms; d) ways of dealing with the baby and mothering bond; e) family dynamics after microcephaly diagnosis; f) prejudice; g) care focused on biological and physical aspects; h) psychological support and welcoming; and i) social support. The results indicate that mothers' psychological and social aspects are affected by the situation, with spirituality, family support, and contact with other mothers who experienced the same situation being coping strategies. According to the reports, the most significant social support was provided by the mothers of other children with microcephaly, whom the interviewees got to know and spend time with during the interdisciplinary treatment of their children. Psychologists also offered significant support for the family facing microcephaly, helping to strengthen motherhood, empower the mother to cope with disillusionment, reorganize and adapt to this baby with multiple disabilities, and enable the mother to be rebuilt idealizations.(AU)


La microcefalia es una afección neurológica que afecta el tamaño de la circunferencia de la cabeza. En esta investigación cualitativa y descriptiva, buscamos evaluar cómo la madre trata el bebé real, identificando los procesos de reconstrucción de idealizaciones maternas. Los instrumentos utilizados fueron el cuestionario sociodemográfico y la entrevista semiestructurada grabada. La recolección se realizó en tres municipios del interior de Paraíba (Brasil), en los hogares de seis madres de bebés con microcefalia de hasta un año de edad. Los datos recopilados en el discurso de las entrevistadas pasaron por el análisis temático categórico utilizando el apoyo teórico psicoanalítico. Se identificaron nueve categorías: a) reacciones al diagnóstico; b) duelo del bebé idealizado; c) elaboración del duelo y mecanismos de afrontamiento; d) formas de tratar el bebé y la maternidad; e) dinámica familiar después del descubrimiento de la microcefalia; f) prejuicio; g) atención centrada en aspectos biológicos y físicos; h) acompañamiento psicológico y acogedor; i) apoyo social. Los aspectos psicológicos y sociales de la madre son afectados. Los resultados muestran que las formas de afrontamiento son la espiritualidad, el apoyo familiar y otras madres que vivencian la misma situación. El apoyo social más significativo lo brindan las madres de otros niños con microcefalia, con quienes las entrevistadas comenzaron a convivir en medio del tratamiento interdisciplinario de sus hijos. El psicólogo desempeña un papel clave en la microcefalia que enfrenta la familia, incluido el fortalecimiento de la maternidad, el empoderamiento de las fuerzas de la madre para hacer frente a la desilusión, ayudarla a reorganizarse y adaptarse a este bebé con múltiples discapacidades, y permitir que sea reconstruida sus idealizaciones.(AU)


Subject(s)
Humans , Female , Pregnancy , Adult , Zika Virus , Maternal Behavior , Microcephaly , Mother-Child Relations , Prejudice , Psychology , Social Support , Bereavement , Adaptation, Psychological , Surveys and Questionnaires , Affect , User Embracement , Family Relations , Psychological Distress , Mothers , Neurologic Manifestations
20.
Rev Rene (Online) ; 22: e62772, 2021. graf
Article in Portuguese | LILACS, BDENF | ID: biblio-1287763

ABSTRACT

RESUMO Objetivo identificar situações de vulnerabilidade e acúmulo de tensões no cuidado da criança com Síndrome Congênita do Zika vírus. Métodos estudo qualitativo, no qual participaram 40 mães de crianças com Síndrome Congênita do Zika vírus. Os instrumentos de pesquisa utilizados foram uma entrevista semiestruturada, construção de genogramas e ecomapas e anotações em diário de campo. Os dados coletados foram submetidos à análise de conteúdo na modalidade temática. Resultados as principais situações identificadas foram: cuidar sozinha do(a) filho(a) com Síndrome Congênita do Zika vírus; conflitos com o companheiro ou separação conjugal; abandono familiar; ausência ou problemas de saúde com outros filhos; e dificuldades financeiras. Conclusão foram consideradas fontes de tensão e estresse familiar as vulnerabilidades, os conflitos familiares e as dificuldades financeiras perante os gastos com medicamentos e tratamentos, revelando as disparidades raciais e socioeconômicas no acesso à saúde.


ABSTRACT Objective to identify situations of vulnerability and accumulation of tensions in the care of the child with Congenital Zika Virus Syndrome. Methods qualitative study, in which 40 mothers of children with Congenital Zika Virus Syndrome participated. The research instruments used were a semi-structured interview, construction of genograms and ecomaps and field diary notes. The collected data were submitted to content analysis in the thematic modality. Results the main situations identified were caring alone for the child with Congenital Zika Virus Syndrome; conflicts with the partner or marital separation; family abandonment; absence or health problems with other children; and financial difficulties. Conclusion vulnerabilities, family conflicts, and financial difficulties were considered sources of family tension and stress when facing expenses with medications and treatments, revealing racial and socioeconomic disparities in the access to health care.


Subject(s)
Epidemics , Zika Virus Infection , Microcephaly , Mothers
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