Table 5 Parent quotes pertaining to providing equitable access to care, information and support.

From: “The ability to get ahead”: Australian parent perspectives on genomics in newborn screening and considerations for potential models of care

Quote 5.1

“That would be severely disappointing [for different states to screen differently]. Yeah, to think that the outcome could have been different…because we live in [location], would be really disheartening. And probably something I’d hold onto… And to think that the outcomes could have been different just because of where I live and the state I live in.” (Mother…Clinical referral)

Quote 5.2

“Everyone should have the same opportunities…whether you live regionally, city, wherever. The number of families that I’ve met from all over regional areas that…don’t have the facilities and the staff. Everyone gets sent to the hospitals in the major cities that overloads that system…you’ve also got to have people willing to do those roles in regional areas too.” (Mother: Clinical referral)

Quote 5.3

“…in the initial period, we found having the genetics team visiting… really reassuring, because he was able to talk about what would happen going forward…that gave us a lot of confidence. We already, I think, had the date of the next visit to hospital. So that just – yeah, that reassured us. But then the biggest thing since that initial period has been having a nurse that we can – we can text her; we can call her.” (Mother…Clinical referral)

Quote 5.4

“I needed more information…even though I didn’t want to know, I needed to know something, and so I remember looking it up. I was in the hospital when I was looking it up and when I came home, [my mum] was looking at something too…” (Mother: NBS)

Quote 5.5

“I would have loved just a basic information sheet that I could have just gone back to, “This is what we have found today. This is what we are testing. So, this is what the test has showed.” (Mother…NBS)

Quote 5.6

“I think [to make sure people continue to participate], you [need to] provide them with enough answers explaining, like why is it important and how they’re going to find support.” (Mother…clinical referral…false negative)

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