Meu filho está crescendo e agora? Explorando as necessidades ambientais de crianças com síndrome congênita do Zika de acordo com a percepção de suas cuidadoras
Introduction: Congenital Zika Syndrome (CZS) was not described in Brazil after the outbreak of microcephaly related to the Zika virus (ZIKV) between 2015 and 2016. The vast majority of children have severe impairment of neuropsychomotor development, mainly associated with microcephaly. In this wa...
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| Formato: | Dissertação |
| Idioma: | pt_BR |
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Universidade Federal do Rio Grande do Norte
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| Endereço do item: | https://repositorio.ufrn.br/handle/123456789/47649 |
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| Resumo: | Introduction: Congenital Zika Syndrome (CZS) was not described in Brazil after the outbreak
of microcephaly related to the Zika virus (ZIKV) between 2015 and 2016. The vast majority of
children have severe impairment of neuropsychomotor development, mainly associated with
microcephaly. In this way, promoting the participation of children with SCZ is a challenge and
professional assistance throughout their development. To be understood as involvement in a
life situation and participation can influence environmental, social, social and situational
factors. People with CS, as well as other developmental disabilities, present themselves in
society in terms of full participation. Although studies that assess the positive influence of
participation in the social context for the development of children with disabilities, information
about environmental needs is still poorly explored. The aim of this study was to explore the
perception of care about the environmental needs of children with SCZ in terms of Barriers and
Facilitators. Material and methods: This is a qualitative research that included 32 caregivers of
children with SCZ. Thematic analysis was used to identify how they are perceived by caregivers
of children with SCZ. The patient public disclosure (PPI) approach was included in order to
validate the data analysis performed by the research. After this step, the data were categorized
in terms of barriers and facilitators and validated by the research group. Results: The
environmental themes expressed in the speeches were initially organized into 10 care and
consolidated into 7 thematic groups or during the EPP processes. The themes were: Social
support; Accessibility to health services; Community participation; Foods; Architectural
accessibility; Medication Adherence and Assistive Technology. Finally, the conceptual map
representing the experiences perceived by caregivers of children with SCZ was elaborated on
barriers and facilitators. A relevant environmental need related to care as a barrier was the lack
of social support for the child with SCZ. Capability was also evidenced as an important
attitudinal barrier. Health services were essential for the lives of children with SCZ and the
availability of auxiliary devices as facilitators of participation. Environmental factors related to
medication and food routines were, for the most part, facilitators. Conclusion: This study
contributes to critical approaches to the impacts on environmental factors of children with SCZ,
using a participatory action methodology through research involvement. The recognition of the
daily growth needs of children with CS in a process of foundations for the evolution of
importance in primordial society. The data point to the need to implement public policies aimed
at children with SCZ, such as the availability of professional use, as well as family action and
care centered on skills. Building friendly environments that promote broad social participation
will contribute to the healthy growth of children with SCZ. |
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