Journal Article

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

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

2022

Overview

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.

• Publisher: John Wiley & Sons, Inc,John Wiley and Sons Inc,Wiley
• Subject: Access to information / Attitudes / Availability / Barriers / Brazil / Building management / Caregivers / Child / Child development / Children / Children with disabilities / Childrens health / Citizen participation / Congenital diseases / congenital Zika syndrome / Data analysis / Data collection / Data points / Developmental disabilities / Drugs / Education / environment / Environmental aspects / Environmental factors / Families & family life / Female / Genetic disorders / Growth / Health services / Healthy food / Human rights / Humans / Information dissemination / Information management / Microcephaly / Minimum wage / Mothers / Needs / Original / Parenting / Participation / Patients / Professionals / Public involvement / Public policy / Qualitative analysis / Qualitative Research / Rehabilitation / Social factors / Social integration / Social interactions / Social participation / Social Support / Sociodemographics / Socioeconomic factors / Vector-borne diseases / Viruses / Wages & salaries / Work skills / Zika Virus / Zika Virus Infection - congenital