Table 1

Clinicians’ use of language

Theme: Clinicians’ use of language
  • ‘It’s really easy to get yourself tied up in knots with risks and percentages, where they’re really not explained properly’

  • ‘Percentages are rarely accurate anyway, so why do we—as parents—hang on to them so dearly (me included!!!!). We were given 13% but it wasn’t properly explained that this was risks (ie, morbidity) not death alone.’

  • ‘I think it’s assumed that parents have a basic understanding of statistics when it’s such a complicated measurement and it’s not properly explained to us.’

  • ‘It’s just jargon…Please…English…so we can understand it!’

  • ‘…some doctors are better than others…at explaining’

  • ‘they go into the usual doctor terminology’ ‘they use hypoplastic instead of small, stenotic instead of stiff’

  • ‘Morbidity to me means death.’

  • ‘Just to talk mum to mum…then you’re not getting the medical jargon’

  • ‘I found a huge discrepancy between the way the cardiologists describe surgery that is, very optimistic, complications are rare, and the surgeons who spell it out in order to cover themselves. Personally, I prefer the latter as it means when it does happen you are aware of it and know it has happened before, whereas the former makes you feel so unlucky and wondering why things have happened.’

  • ‘We were given very detailed information by the surgeons on the eve of our sons’ op but … up until that time we had only seen cardiologists who were really quite blasé… We were told ‘he’ll be fine’ they do switches all the time. Turns out it was far from that…’