Skip to main page content
U.S. flag

An official website of the United States government

Dot gov

The .gov means it’s official.
Federal government websites often end in .gov or .mil. Before sharing sensitive information, make sure you’re on a federal government site.

Https

The site is secure.
The https:// ensures that you are connecting to the official website and that any information you provide is encrypted and transmitted securely.

Access keys NCBI Homepage MyNCBI Homepage Main Content Main Navigation
. 2022 Dec;25(6):2828-2836.
doi: 10.1111/hex.13587. Epub 2022 Oct 25.

My child is growing and now? Exploring the environmental needs of children with congenital Zika syndrome according to their caregivers' perceptions

Monique L G Coelho  1 , Taynah N C Campos  1 , Adriana G Magalhães, Jean B Felix  1 , Adriana Melo, Jousilene S Tavares, Karolline S Monteiro  1 , Egmar Longo  1
Affiliations

My child is growing and now? Exploring the environmental needs of children with congenital Zika syndrome according to their caregivers' perceptions

Monique L G Coelho et al. Health Expect. 2022 Dec.

Abstract

Introduction: Promoting social inclusion of children with congenital Zika virus syndrome (CZS) is challenging, mostly, when there is a transport problem, low access to information and a long distance between the house and health services. Participation can be understood as involvement in a life situation and is strongly influenced by physical, social and attitudinal environmental factors; however, was still little explored in the case of children with CZS. In this sense, this study aimed to explore the perception of caregivers about the environmental needs of children with CZS, differentiating barriers and facilitators.

Methods: This is qualitative research. Thematic analysis was used to identify the environmental needs perceived by caregivers of children with CZS. The patient public involvement (PPI) approach was incorporated with the purpose of validating the data analysis performed by the researchers. After this step, the data were categorized in terms of barriers and facilitators and validated by the group of researchers.

Results: A relevant environmental need reported by caregivers as a barrier was social support for children with CZS. Ableism was also evidenced as an important attitudinal barrier. Health services were essential for the lives of children with CZS 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 linked to environmental factors of children with CZS, recognition of these children is an evolving process and fundamental to basic rights for adequate living in society. The data point to the need to implement public policies aimed at children with CZS, as well as the availability of qualified professionals to apply family-centred care and skills-focused management. Building friendly environments that promote broad social participation will contribute to the healthy growth of children with CZS.

Patient or public contribution: Six caregivers (20% of the caregivers) as part of the PPI approach were contacted and participated in individual virtual meetings to discuss the results of the thematic analysis regarding the environmental needs of children with CZS.

Keywords: caregivers; children; congenital Zika syndrome; environment; participation.

PubMed Disclaimer

Conflict of interest statement

The authors declare no conflicts of interest.

Figures

Figure 1
Figure 1
Methodology workflow. PPI, public and patient involvement.
Figure 2
Figure 2
PPI scheme on the first result. PPI, public and patient involvement.
Figure 3
Figure 3
Distribution of quotes by themes according to methodological step. PPI, public and patient involvement.
See this image and copyright information in PMC

References

    1. Theirworld . Education for the most marginalised children [Internet]. 2022. Accessed March 3, 2022. https://theirworld.org/explainers/children-with-disabilities#section-2
    1. Instituto Brasileiro de Geografia e Estatística (IBGE) . Censo demográfico—Características gerais da população, religião e pessoas com deficiência. Rio de Janeiro; 2010. p. 215.
    1. United Nations Children's Fund (UNICEF) . Disabilities [Internet]. September 23, 2020. Accessed March 3, 2022. https://www.unicef.org/disabilities/
    1. Melo A, Gama GL, Da Silva Júnior RA, et al. Motor function in children with congenital Zika syndrome. Dev Med Child Neurol. 2020;62(2):221‐226. - PubMed
    1. Carvalho A, Sales HF, Ventura P, Gnoatto‐Medeiros M, Brites C, Lucena R. The neurodevelopmental spectrum of congenital Zika infection: a scoping review. Dev Med Child Neurol. 2020;62:1356‐1362. - PubMed

Publication types