Fotografias do cotidiano: participação de crianças com síndrome congênita do zika durante a pandemia da Covid-19

Abstract

Introduction: The COVID-19 pandemic began almost five years after the epidemic caused by the Zika virus. In Brazil, more than 3500 children with Congenital Zika Syndrome (CZS) face barriers that affect participation in daily activities, which can be aggravated in health emergency situations. Objective: Explore the daily lives of children during the Covid-19 pandemic through photographs captured by mothers. Methodology: This is a participatory action research that used photovoice to collect information from Brazilian children with SCZ through the perception of their mothers. Seven participants acted as co-researchers, all were young mothers of children with SCZ aged between 2 and 5 years. Some phases of the research were carried out online, others by phone call and included the following steps: 1) recruitment of participants; 2) Individualized training; 3) Sociodemographic Interview; 4) Pilot; 5) Training for the realization of Photovoice; 6) Capture of photos by the participants; 7) Focus group to contextualize the photos; 8) Transcription and data analysis; 9) Validation of analyzes by mothers. Results: The analysis of the content, extracted from the mothers' statements about the photos, revealed five categories that represent aspects that influenced the children's participation, they were: Preferences for Participation, Family Relationships, Access to Health, Access to Education and Social Isolation. To represent the children's preferences, the mothers reported situations that refer to their children's desire to play with other children and family members, as well as to have autonomy. The family environment was characterized as a happy and peaceful place, which offers security for children. Therapies were cited as essential services for the child's development, and the absence caused harm to the child's health. Education was commented on in terms of accessibility to remote teaching, lack of physical structure and pedagogical preparation. Finally, the children's routine was directly affected by social isolation, marked by the interruption of therapies, medical consultations and behavioral changes in children. Conclusion: The photographs captured various aspects of the routine of children with SCZ who were impacted by the Covid-19 pandemic. The data reinforce the importance of welcoming and trying to reduce the negative effects of social isolation, so that it is possible to offer comprehensive care to children with SCZ, with a view to promoting participation and global health. In addition to emphasizing the effectiveness of listening to mothers' opinions, placing them as protagonists of the study.