Parents with an infant who has just been diagnosed with cystic fibrosis want facts – and don’t want to learn of the diagnosis over the phone.
These are some of the findings from a survey of 26 parents at two Australian tertiary CF specialist centres, which researchers say highlights ways to better support families in the vulnerable period immediately following a CF diagnosis.
The study reveals many parents first learned of the diagnosis following screening over the phone, with the suboptimal communication further compounded in some instances when the caller had no specific knowledge of the implications of the disease.
Most parents indicated that when they first learned of the diagnosis, they wanted factual information about the disorder, how it is treated and how to care for their child.
At this point, psychosocial topics and information on genetics were not considered essential for most.
This shows parents need practical information and skills to care for their child, “rather than dwelling on the negative aspects of CF” according to study authors Danielle Edwards and collegaues from the College of Healthcare Sciences at James Cook University.
Writing in the Journal of Child Health Care they say it was also clear that parents preferred getting information face-to-face from a health professional who had expertise in CF.
More than three quarters of respondents reported that they were told of their child’s CF diagnosis over the phone.
“This was considered unsatisfactory because there was a lack of sensitivity as to where the parent might be when they were having that first crucial conversation….Also some of the phone calls were delivered by people with poor English skills or who had no specific knowledge about the implications of a CF diagnosis.”
“It is recommended that actions be taken by CF centres to consider the most appropriate ways to deliver such potentially distressing news. Use of technologies such as Facetime and Skype may partially address some of the concerns raised regarding telephone notification, while also catering for access challenges experienced by rural and remote families.”
There was mixed responses regarding the best time frame in which to deliver the education.
Most parents also searched for additional information on the Internet, highlighting the importance of guiding parents to credible sources.