My child is growing and now? Exploring the environmental needs of children with Congenital Zika Syndrome according to their parents' point of view
Congenital Zika Syndrome; Participation; children; needs; environment.
The scenarios involving the participation of children with Congenital Zika Syndrome (CZS) in society are complex and dependent on continuous interprofessional care throughout life in addition to psychological and social support provided by health professionals and managers, in order to promote focused monitoring processes in the family, that is, the integral care of the child and his/her family. On the other hand, children with disabilities have less access to health and education when compared to their peers without developmental disabilities. Public services have been insufficient and fragmented; and guidance, social support to the family and monitoring of children with CZS destabilized. Thus, aspects related to the use of products and technology, relationships and attitudes of family members, friends and health professionals are important for the construction of the care line, as well as the integration of children with CZS into society. Therefore, knowledge about the needs of children with CZS, especially environmental factors, are essential for planning inclusive public actions that are representative of this population. The objective of this research was, therefore, to deepen the parents' perception about the needs related to the environmental factors of children with CZS, in terms of barriers and facilitators.
Participants with common characteristics were intentionally selected, whose data collection was based on active research, telephone calls and direct approaches. The inclusion criteria considered the following requirements: parents/caregivers of children diagnosed with CZS; age between 0 and 6 years; users of rehabilitation services in the area covered by the study (Rio Grande do Norte and Paraíba). Semi-structured interviews were carried out in a participatory manner through focus groups formed by 4 to 6 participants for data collection. Six focus groups lasting from 60 to 90 minutes were conducted until data saturation was reached. Data analysis followed a methodological approach divided into three stages, thematic analysis, data processing reliability test (public/patient involvement in research - EPP) and peer review.
The first result presented ten themes from the thematic analysis, which were readjusted to seven themes, after the EPP process. Subsequently, the material was categorized into barrier and facilitators and peer-reviewed, the final result of which generated a conceptual map of the environmental needs perceived by family members of children with CZS.
Themes about the need for support and recognition from society dialogue with each other in the representation of the lack of support policies and difficulties regarding the inclusion and social recognition of children with CZS. Access to health services emerges as an essential part of physical and cognitive development, as well as the sociodemographic circumstances that affect treatment adherence. Some statements reveal the importance of the correct architectural structuring in order to become adapted to children, as well as excerpts that portray adaptive strategies of the food and medication routine used by parents and caregivers.
This study contributes to critical approaches about the impacts related to environmental factors of children with CZS, using a methodology of participatory action through the involvement of parents in the research. Recognizing the daily needs of children with CZS is an evolving process, essential to the basic rights for adequate interaction in society. The importance of public policies to encourage participation was perceived, as well as the commitment of professionals to apply family-centered care, whose management must be focused on skills, with the purpose of building legitimate environments for the inclusion of children with CZS.