Necessidades de crianças com síndrome congênita pelo Zika vírus no contexto domiciliar

Duarte, Jhullyany dos Santos; Santos, Lunara Oliveira Farias; Sette, Gabriela Cunha Schechtman; Santos, Thaisa de Farias Cavalcanti; Alves, Fábia Alexandra Pottes; Coriolano‐Marinus, Maria Wanderleya de Lavor

doi:10.1590/1414-462x201900030237

Cited by 18 publications

(35 citation statements)

References 24 publications

(28 reference statements)

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“…28 29 Our study has demonstrated that the lack of trained professionals to support families is a major issue for parents that needs to be addressed. 30 Furthermore, parents expressed a great need for information about the condition of their children. 31 The Centers for Disease Control and Prevention has produced a pocket guide summarising paediatric guidelines on initial assessment and outpatient treatment for CZS.…”

Section: Discussionmentioning

confidence: 99%

How congenital Zika virus impacted my child’s functioning and disability: a Brazilian qualitative study guided by the ICF

et al. 2020

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IntroductionThe Zika virus outbreak in Brazil has had devasting social, medical and financial consequences for families. Both researchers and clinicians are measuring longer-term outcomes to understand the impact of the Zika on child development, functioning and disability. Outcomes and tools used to measure them are very varied and we are unclear how meaningful they are to families and children. This study aimed to identify the parents’ perspectives on relevant areas of functioning and disability that should be included as outcome measures for children with congenital Zika syndrome (CZS), as guided by the International Classification of Functioning, Disability and Health (ICF).MethodsThis qualitative study included parents or caregivers of children aged 0–5 years with confirmed CZS from two states in northeastern Brazil. Interviews were conducted using focus groups. Content mapping followed the WHO’s ICF linking rules. Three raters analysed the content using NVivo V.11.ResultsThirty-two caregivers participated in six focus groups, 88% were mothers with an average age of 30 years. Most children were male (59%) and all were level V (severe) to on the Gross Motor Function Classification System (GMFCS). Overall, 825 themes were mapped to 36 ICF categories. Although parents mentioned areas across all ICF domains, they reported that areas of mobility, eating and recreation were most relevant for them. In addition, environmental factors were highly identified as barriers, specifically services, policies and access to assistive devices. The most predominant facilitators within the environment were; immediate family support, kind relationships with therapists and support from the extended family.ConclusionsAlthough parents emphasised issues related to mobility, their greatest concerns involved environmental factors, such as access and quality of health and social services, systems and policies. These results reinforce the importance of including parents’ perspectives when selecting or developing outcome measures for CZS.

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Section: Discussionmentioning

confidence: 99%

How congenital Zika virus impacted my child’s functioning and disability: a Brazilian qualitative study guided by the ICF

et al. 2020

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“…In addition, uncertainties about functional limitations, future implications and demands for care to come, still under study (9) . Due to the great possibility of severe limitations of cognition and motor skills, there is a need for coordinated and family-centered health care (9)(10) . There is evidence that family-centered care for children with special needs has better results (11) .…”

Section: Introductionmentioning

confidence: 99%

“…In this perspective, care for children with CZVS must be multi-professional to support the family in comprehensive care for the child's biological, psychological and social development. In addition to the daily family care to meet their needs related to functional limitations, it includes early stimulation in the family care routine (10,12) . Early stimulation, especially in the first years of life, a period in which brain development occurs more quickly, maximizes the potential for physical growth and neurological, behavioral, cognitive, affective and social maturation (12) .…”

Section: Introductionmentioning

confidence: 99%

Theoretical care model for children with congenital Zika virus syndrome in the family context

Teixeira

Silva

Miranda

et al. 2021

Rev. Latino-Am. Enfermagem

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Objective: to develop a theoretical model about the care of children with Congenital Zika Virus Syndrome in the family context. Method: the Straussian Grounded Theory and the theoretical/philosophical framework of Callista Roy and Leonardo Boff were used. It was carried out in northeastern Brazil, with 19 participants, in four sample groups. The data were collected and analyzed simultaneously, using the constant comparison method. Results: the theoretical model comprising the mother’s care for the child with Congenital Zika Virus Syndrome in the family context is formed by five categories: revealing family care, centered on the mother, to the child with the syndrome; identifying the maternal bond that determines the care for children with the syndrome in the family context; identifying the factors that hinder the mother’s care for the child with the syndrome; recognizing the evolution of the child with the syndrome in the face of early stimulation care; and recognizing harms due to the absence of early stimulus to children with the syndrome. Conclusion: the phenomenon runs through the care of the child with Congenital Zika Virus Syndrome, in the family context and centered on the mother, and is faced with the need for shared responsibility among the family members.

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“…Em geral, essa população apresentava graves danos no desenvolvimento neuropsicomotor (Brunoni et al, 2016), sendo descritos riscos para sequelas como atraso motor, hipertonia, deformidades e contraturas de membros, e paralisia cerebral (PC) (Brunoni et al, 2016;Marques et al, 2019;Pessoa et al, 2018), impactando desfavoravelmente na participação em atividades como o brincar, nos diferentes ambientes, como o domiciliar (Duarte et al, 2019); levando a limitações na capacidade funcional e na qualidade de vida individual e familiar (Brunoni et al, 2016).…”

Section: Introductionunclassified

Desempenho e oportunidade motora em lactentes com e sem microcefalia: Estudo caso-controle

Santos

Barreto

Silva

et al. 2021

RSD

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O estudo objetivou caracterizar o desempenho motor grosso e as oportunidades de estimulação motora presentes no ambiente domiciliar de lactentes com microcefalia por Zika vírus (ZIKV), comparando-os com lactentes sem microcefalia de instituições públicas de saúde do Nordeste do Brasil, além de verificar o impacto da microcefalia e fatores associados nos desfechos avaliados. Estudo caso-controle que foram utilizados dados de nascimento dos lactentes, gestacionais e sociodemográficos maternos, e dos testes: Gross Motor Function Measure (GMFM), Affordances in the Home Environment for Motor Development (AHEMD), e Sistema de Classificação da Função Motora Grossa (GMFCS). Para analisar o impacto da microcefalia nos testes associada a fatores sociodemográficos ou clínicos utilizou-se a regressão linear múltipla. Participaram 40 lactentes com microcefalia por ZIKV, com média de idade de 15,3 (3,1) meses; e 40 lactentes sem acometimento, com média de idade de 14,8 (4,4) meses. 85% dos lactentes com microcefalia por ZIKV classificou no nível V do GMFCS. Diferenças significativas (p<0,001) foram evidenciadas para todas as dimensões do GMFM, para variedade de estimulação, brinquedo motricidade fina e pontuação total do AHEMD, com valores sempre menores nos lactentes com microcefalia por ZIKV. Microcefalia associada a variáveis dos lactentes, maternas e da residência são fatores que podem explicar a pontuação no GMFM (p<0,001). Os resultados reforçam a necessidade de uma assistência integral, centrada na família, uma vez que a resolutividade dos impactos do ZIKV sobre o desenvolvimento motor e o cuidado prestado pelas famílias é uma questão de saúde pública importante.

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Necessidades de crianças com síndrome congênita pelo Zika vírus no contexto domiciliar

Cited by 18 publications

References 24 publications

How congenital Zika virus impacted my child’s functioning and disability: a Brazilian qualitative study guided by the ICF

How congenital Zika virus impacted my child’s functioning and disability: a Brazilian qualitative study guided by the ICF

Theoretical care model for children with congenital Zika virus syndrome in the family context

Desempenho e oportunidade motora em lactentes com e sem microcefalia: Estudo caso-controle

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