Jessup, M., Shields, L., Branch-Smith, C., and Douglas, T. (2013) "Scary stuff": parents' self-seeking of information via the internet following their child's diagnosis with cystic fibrosis. Pediatric Pulmonology, 48 (S36). p. 448.

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Abstract

Objective: To explicate the information seeking behaviours of parents of an infant diagnosed with CF.

Background: The diagnosis of their child with cystic fibrosis (CF) is a devastating event compounded for most parents by CF being a hitherto unknown entity. Information and education are vital to their processing what is CF, its implications for their child and family, and their efficacious engagement with care. While health carers may plan a metered presentation of information and education, parents reportedly pursue further facts for themselves as they seek to process their child's redefined health status.

Method: This qualitative inquiry was conducted to inform the development of a national survey of parent information needs beyond newborn screening (NBS). Semi-structured interviews were conducted with parents (n=10) of infants aged from 1 to 3 years diagnosed with CF following NBS. Interviews were recorded, transcribed and thematically analysed.

Results: Following diagnosis, participants reported embarking on a quest to find out all they could about this disease, which some had heard but had little reliable integral knowledge. Their pursuit was born of a desire to "get everything we could” and "to know the answers." There was also a desire to supplement formal hospital literature, described as outdated, and a need to do their own searching. However, the internet gave them access to often unregulated information for which novice parents had neither the ability nor insight to discern the relevance or reliability of, despite trying to "stick to reputable websites." Many reported resultant negative feelings coupled with a sense of information overload, particularly when first confronted with statistical and lifespan predictions, or emotive pictorial depictions. Several participants conveyed regret; "backing away" from accessing noninteractive, unsupported sources of information, which for some had engendered fear, summarised by one participant as "scary stuff."

Findings: Imparting information to parents, especially in the initial diagnostic phase, will always be a process of balancing need-to-know with measured timing and context. Findings from this study can equip CF care teams with insight into the art of balancing information and guiding parents, who are likely to access the relatively unregulated world of the internet. Maintenance of currency in official websites and a user-friendly perspective regarding content and its display is also recommended.

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