Veloso Gabrielle Gonçalves, Machado-Kayzuka Giovanna Cristina, Neris Rhyquelle Rhibna, Leite Ana Carolina Andrade Biaggi, Barbosa Nayara Gonçalves, Frizzo Heloísa Cristina Figueiredo, Escaliante Gabrielle Vedoveto, Leite Adriana Moraes, Gomes Beato Beatriz Volpin, Santos Poliane da Silva, Gomes-Sponholz Flávia, Nascimento Lucila Castanheira
Ribeirão Preto College of Nursing, University of São Paulo, Ribeirão Preto 14040-902, Brazil.
Department of Health Sciences, Public University of Navarre, 31006 Pamplona, Spain.
Children (Basel). 2024 Oct 19;11(10):1267. doi: 10.3390/children11101267.
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.
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.
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.
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.
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.
先天性弓形虫病会导致儿童出现严重并发症，并带来重大的全球健康挑战。在巴西，孕期弓形虫病的患病率以及先天性病例数为每1000例活产中有0.3至8例。先天性弓形虫病的临床表现可能包括神经和眼部损伤等其他健康问题，这给受影响的家庭带来了沉重负担。
本研究旨在调查在社交媒体（尤其是照片墙）上分享经历的先天性弓形虫病患儿母亲的经历和动机。
采用定性虚拟人种志方法，探究被诊断为先天性弓形虫病患儿的母亲所分享的内容，旨在了解社交媒体如何帮助她们制定应对策略以及她们所建立的支持网络。
分析了15个照片墙账号，12位母亲参与了深入访谈。主题分析揭示了三个主要主题：最初对信息和支持的寻求、社交媒体在宣传和教育方面不断演变的作用以及支持性在线社区的创建。
本研究强调了社交媒体在为面临类似挑战的母亲提供情感支持、传播信息和促进社区发展方面的潜力，最终有助于制定更好的护理策略，并提高专业人员对支持患有先天性弓形虫病家庭的认识。
