Faculty of Health Science of Trairi, Federal University of Rio Grande do Norte, Santa Cruz, Brazil.
Health Expect. 2022 Dec;25(6):2828-2836. doi: 10.1111/hex.13587. Epub 2022 Oct 25.
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.
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.
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.
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.
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.
促进先天性寨卡病毒综合征（CZS）患儿的社会包容具有挑战性，尤其是在存在交通问题、信息获取途径有限以及家庭与卫生服务机构之间距离较远的情况下。参与可以被理解为参与生活状况，受到身体、社会和态度环境因素的强烈影响；然而，在 CZS 患儿的情况下，这方面的研究还很少。从这个意义上说，本研究旨在探讨照顾者对 CZS 患儿环境需求的看法，区分障碍和促进因素。
这是一项定性研究。使用主题分析来确定 CZS 患儿照顾者感知到的环境需求。患者公众参与（PPI）方法被纳入其中，目的是验证研究人员进行的数据分析。在这一步之后，数据根据障碍和促进因素进行分类，并由研究人员小组进行验证。
照顾者报告的一个重要环境需求障碍是为 CZS 患儿提供社会支持。能力歧视也被证明是一个重要的态度障碍。卫生服务对 CZS 患儿的生活至关重要，辅助设备的可用性是促进参与的因素。与药物和饮食常规相关的环境因素在很大程度上是促进因素。
本研究有助于对 CZS 患儿环境因素相关影响进行批判性研究，对这些患儿的认识是一个不断发展的过程，是基本人权的一部分，有利于他们在社会中获得适当的生活。这些数据表明，需要为 CZS 患儿实施公共政策，并提供合格的专业人员，以实施以家庭为中心的护理和以技能为重点的管理。建立促进广泛社会参与的友好环境将有助于 CZS 患儿的健康成长。
作为 PPI 方法的一部分，联系了六名照顾者（占照顾者的 20%），并与他们进行了单独的虚拟会议，讨论关于 CZS 患儿环境需求的主题分析结果。
