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

Abstract

Introduction: In Brazil, more than 3500 children with congenital Zika syndrome (CZS) face difficulties participating in activities of daily living, which may be aggravated by health emergencies, such as the COVID-19 pandemic. Participation could be defined as the individual's involvement in daily life situations, and participation restrictions are problems that may arise in involvement in everyday situations.

Aim: To explore the daily lives of children with CZS during the COVID-19 pandemic using photographic narratives captured by mothers and discuss possible strategies to improve participation results.

Methods: In this participatory action research, seven young Brazilian mothers acted as co-researchers using photovoice to describe the experiences of their children with CZS (from 2 to 5 years old). Also, mothers contributed to validate the contents. The research was conducted online and included the following steps: pilot study, recruitment, individualized training, sociodemographic interview, photovoice training, photo taking, focus group for contextualization, data transcription and analysis and validation of analyses by the mothers.

Results: Content analysis revealed five categories that influenced the participation of the children: participation preferences, family relationships, access to healthcare, access to education and social isolation. Regarding participation preferences, mothers reported their children's desire to play with peers and family members and have autonomy. Mothers described the family environment as a happy, peaceful and safe place for the children. Lack of therapy was perceived to negatively impact the health of children; thus, treatments were considered essential for child development. Access to education included accessibility of remote education and a perceived lack of infrastructure and pedagogical preparation. Last, social isolation due to COVID-19 directly affected the daily lives and behaviour of the children, interrupting therapies and medical appointments.

Conclusion: The photos and narratives captured several aspects of the daily lives of children with CZS impacted by the COVID-19 pandemic, reinforcing the importance of considering the negative effects of social isolation and offering education and social assistance to promote participation and integral health.

Patient/public contribution: Consistent with a participatory action research framework, Mothers acted as co-researchers and participated in all stages of the research, especially in validating the data analysed by the researchers.

Keywords: COVID-19; children; congenital Zika syndrome; participation; photovoice.