title: Finding Motivation: Online Information Seeking Following Newborn Screening for Cystic Fibrosis.
abstract: Cystic fibrosis (CF) is a genetic disease that has no manifestations for carriers but is terminal for those diagnosed with it. CF is identified through newborn screening (NBS) tests, and most families have no knowledge about CF before their contact with a NBS program. Acknowledging the Internet as a popular health information source, this study examined information exchange about CF in online community forums. This article, guided by self-determination theory, aimed at providing understanding of psychological needs and motivation for health information seeking and active communication about CF. Through online communication with other families who share similar experience, caregivers of newborns diagnosed with CF sought and received support for their competence, autonomy, and relatedness needs during the initial CF testing and diagnosis reconciliation process. Online communities play an important role in the information seeking related to CF diagnosis and could become active partners in strategic knowledge dissemination efforts.
authors.affiliation: University of Florida, Gainesville, Florida, USA yulias@ufl.edu.
authors.forename: Yulia A
authors.initials: YA
authors.lastname: Strekalova
mesh_terms: D003550:Cystic Fibrosis; D006579:Heterozygote; D006801:Humans; D007231:Infant, Newborn; D057226:Information Seeking Behavior; D020407:Internet; D009042:Motivation; D015997:Neonatal Screening
keywords: caregivers; communication; community capacity and development; cystic fibrosis; group interaction; online research; thematic analysis