Bad news: Families' experiences and feelings surrounding the diagnosis of Zika-related microcephaly.

The rapidly increasing number of cases of Zika virus and limited understanding of its congenital sequelae (e.g., microcephaly) led to stories of fear and uncertainty across social media and other mass communication networks. In this study, we used techniques generic to netnography, a form of ethnography, using Internet-based computer-mediated communications as a source of data to understand the experience and perceptions of families with infants diagnosed with Zika-related microcephaly. We screened 27 YouTube™ videos published online between October 2015 and July 2016, during which the Zika epidemic started, peaked, and declined. We identified three themes: (a) experiencing the news of a diagnosis of Zika-associated microcephaly; (b) experiencing feelings and expectations of the 'imperfect' child; and (c) seeking to understand microcephaly to care for the child. We found that families experienced distressing feelings of shock, sadness, hopelessness, and pain, while dealing with emerging and sometimes conflicting information being transmitted by news outlets, uncertainty about the child's health, and healthcare providers' lack of clarity to guide the family members. The 'unknown' factor of ZIKA was an additional stressful factor in the experience of the families.
(© 2018 John Wiley & Sons Ltd.)