Table 3

Information needs of families

Theme: Information needs of families
No right amount of information
  • ‘Some parents will want to know everything and others want to know as little as possible’

  • ‘If we knew all the potential outcomes I think signing the consent would have been so much harder’

  • ‘You can’t have a blanket rule of ‘We must tell them every possible thing that could go wrong’ or, ‘We only tell them the most common’. You need to look at it case-by-case’

  • ‘It’s such a delicate balance… you’ve got to try and test the waters with the patient’s parents and the patient’s themselves to find out how much information… you need to give this person. It has to be an individual case-by-case scenario’

Types of information
  • ‘Something to take away and look at and digest in your own time’

  • ‘Even a simple information sheet… you might not have internet access… you might need to go into your room or sit by the bed and have another look at it a bit later’

  • ‘Little Hearts Matter… DVD pack for antenatal diagnosis. It was brilliant.’

Access to staff/lay support
  • ‘Community Liaison Nurses are very useful and parents should be given contact numbers as a matter of course’

  • ‘knowing who to ask… that there’s somebody you can ask about things you might spot… signposting’