Table 2

Being unprepared for complications

Theme: Being unprepared for complications
Differing priorities of HCP and families
  • ‘NG feeding was never something I thought about when we considered the prospect of having a congenital heart disease child.’

  • ‘We weren’t mentally prepared for the longer stay as we were told ‘in and out in 5 days’.’

  • ‘I really wish someone had prepared me for the psychological side effects… anything explaining how trauma and complications can have a negative impact on your child’s self-esteem and mental well-being’

  • ‘Tell parents beforehand… This is very likely going to affect development in growth, height, learning and development and things like that’

  • ‘They do tell you some of the physical things that might happen’ but not ‘how it might affect… a person’s behaviour or emotions’

Timing of consent
  • ‘You know when they do the consent forms it’s usually the night before surgery which… is a bad idea, because you’re not taking that in… if you did it a week before… you take in a lot more… it’s easy for you to digest and understand’

  • HCP, healthcare professionals.