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

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.

The burden of global outbreaks: Photos of the daily lives of children with congenital Zika syndrome during the COVID‐19 pandemic

“…8 Public policies favouring equity may help address this limitation in care, especially for low-income populations, however, this remains a significant challenge. 9 The outbreak of COVID-19 reached a pandemic status in March 2020, 10 when a health emergency state was declared, and preventive measures were enforced worldwide. Some health conditions were considered a higher risk, including cerebral palsy and CZS.…”

“…However, most specialized rehabilitation centres (CER) offer limited services, compelling caregivers to travel extensively searching for care for their children 8 . Public policies favouring equity may help address this limitation in care, especially for low‐income populations, however, this remains a significant challenge 9 …”

“… 8 Public policies favouring equity may help address this limitation in care, especially for low‐income populations, however, this remains a significant challenge. 9 …”