Digital narratives: the impact of Instagram® on mothers of children with congenital toxoplasmosis

Background: Congenital toxoplasmosis leads to severe complications in childhood and presents significant global health challenges. In Brazil, the prevalence of toxoplasmosis during pregnancy and congenital cases ranges from 0.3 to 8 per 1000 live births. The clinical manifestations of congenital toxoplasmosis can include neurological and ocular damage, among other health issues, which place significant burdens on affected families. Objective: This study aims to investigate the experiences and motivations of mothers of children with congenital toxoplasmosis who share their journeys on social media, particularly Instagram. Methods: A qualitative virtual ethnography was used that explored the content shared by mothers of children diagnosed with congenital toxoplasmosis, aiming to understand how social media aids in their coping strategies and the support networks they create. Results: Fifteen Instagram accounts were analyzed, and twelve mothers participated in in-depth interviews. Thematic analysis revealed three main themes: the initial search for information and support, the evolving role of social media in advocacy and education, and the creation of a supportive online community. Conclusions: This study highlights the potential of social media to provide emotional support, disseminate information, and foster communities among mothers facing similar challenges, ultimately contributing to better care strategies and professional awareness for supporting families dealing with congenital toxoplasmosis.