Finding Motivation: Online Information Seeking Following Newborn Screening for Cystic Fibrosis

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...

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Bibliographic Details
Published in:Qualitative health research 2016-07, Vol.26 (9), p.1180-1190
Main Author: Strekalova, Yulia A.
Format: Article
Language:English
Subjects:
Autonomy
Caregivers
Communication
Competence
Cystic
Cystic Fibrosis
Diagnostic tests
Disease management
Dissemination
Health information
Health technology assessment
Heterozygote
Humans
Infant, Newborn
Information Seeking Behavior
Information sharing
Internet
Internet resources
Knowledge sharing
Medical diagnosis
Medical screening
Motivation
Neonatal Screening
Newborn babies
Psychological needs
Reconciliation
Relatedness
Self determination
Social network analysis
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Summary: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.
ISSN:1049-7323
1552-7557
DOI:10.1177/1049732315614580