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.