Table 2:

Representative quotes – disclosure of results: parental approach to test results and their impact

Approach to testing and disclosing results

‘It’s important to me to be informed of what’s going on. I think it’s standard procedure to get a head scan and someone mentioned, “Oh, he has a haemorrhage in his brain”. And I was like, wait, wait, wait. How do you know? And they were like, “Oh, from the scan…it’s procedure”. Well, nobody told me about it. They eventually did another one a week later and it was fine, but I wish I would have been told so I could ask about it’ (P17).

‘I would want to get the results while he was here or as soon as possible, as soon as they’re available’ (P11).

‘It doesn’t matter to me [who tells us results] as long as the person is skilled and well-versed in what they’re talking about, and they’re basing it on research and facts. The person who can answer the most questions. If it’s an advanced practice person, if it’s a specialist, even if it’s a team of those folks. I would want the people who can answer the questions the best’ (P9).

‘I feel like if they could give the results while he’s still in the NICU, we have, as parents, more access to doctors to be able to ask follow-up questions as we think on them versus if we are already home, then the questions might not come until a couple of days later’ (P11).

Impact of false-positive results

‘I don’t know if there’s enough studies to know what the percentage of that go wrong, but I would want to know that when I got the results of the test. We think this is possible, but 70% of the time this is right, 30% it’s wrong. That’s up to then us, as parents, to decide what to do with that information’ (P8).

‘I think then more testing should be done before it’s actually done on baby subjects where there’s also a probability to affect their lives. Continue animals and other research testing before it’s run on us’ (P10).

‘Oftentimes things get tested, and you start projecting that. Nothing has actually proven to you yet that that exists, it’s just the test said there’s a probability…you start projecting certain behaviours on a child’ (P2).

‘It is a very emotional rollercoaster to go through…you too as a parent would be put through the therapies that are being used and learning this whole lifestyle that you may not actually need to be conditioned for’ (P16).

Parent study number is in parentheses. NICU, neonatal intensive care unit.