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Table 2 Questions asked of participating pregnant women; identified themes; and representative quotes

From: Pregnant women’s views on how to promote the use of a decision aid for Down syndrome prenatal screening: a theory-informed qualitative study

Theme

Representative excerpts of quotations

Group in which idea was mentioned

No. of people who mentioned the idea

Theme 1: Information channel - What would be the best way to inform you about the PtDA?

Desirable information channel

 Healthcare professional

For sure, if the health professional gets it out of the package of material and says this one here, it’s really important that you fill it in. I think I’d maybe pay a bit more attention, I’d begin with that document first. In fact I think that’s the only way I’d read the whole thing through (FG2, participant 6).

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 Internet: Official websites

I’d expect to find that kind of information on a government health website (FG1, participant 1).

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8

 Healthcare professional + Internet

You can reach people on the Internet. Information is more accessible there. But there are people who won’t use the Internet to get that information. So for those people, who maybe don’t know how to try and get the tool, or don’t want to and don’t see the need to get the information, if it’s the doctor who gives it to them, well then… (FG1, participant 2)

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4

 Video on Youtube

But if not maybe a video on Youtube which the doctor could refer you to, [a web address] in the documents at the end. If you want more information, in fact, you could go see the tutorials on Youtube, but otherwise there isn’t anywhere else (FG2, participant 4)

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2

Undesirable information channel

 Social networks

I hate to say, but [don’t use social networks] so you don’t lose credibility. You know, if it’s on the social networks you’d lose some (FG2, participant 7).

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4

 The Internet

I won’t go looking for it [on the internet]. I’d wait for someone to give it to me, because it’s not up to me to go looking for that stuff. You’ve made time in your schedule for your appointments so they should be the ones to give you the information and to know they have to give you this material (FG2, participant 9).

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Theme 2: Information/content - What information/explanations would you like to get to help you use the PtDA?

Helpful information

 Add PtDA to documents

But especially now where we already have so much information on paper, so that these documents are our source of information, but to only have the information somewhere else, it’s not very helpful, to have to go find the information on another platform so that … (FG2, participant 6).

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3

 Goal of the PtDA

Perhaps just add what the tool is for. Like, this tool will help you make an informed choice, it’s for making a decision that you’re comfortable with. See, just highlight what the tool is for, what you can do with it, without necessarily saying watch out if you don’t you it (laughs)(FG1, participant 2).

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2

 Resources available

Well maybe say that if you read this and have some questions, here’s where you can go… what are the resources if you have questions, if you still don’t know after reading it …(FG3, participant 14).

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2

 Information about availability

If he doesn’t tell me about it, or give it to me, but if he tells me where I can get it, yes (FG3, participant 2).

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1

 Follow-up would be effective

I think that would give the tool more weight. The doctor does a follow-up, and can check that the person has understood … it’s an important decision to make and I’m supporting you and respect the choices you make. I think that makes sense, to give the documents and then [there’s a follow-up]… (FG3, participant 13).

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 Closeness of consultations

I’m not sure where this is going, but say you see the doctor once, then the second time you see him, he does the prescribing, that makes sense. But the trouble is, you don’t get two appointments really close together so that may not work (FG3, participant 1).

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2

Unhelpful information

 Time to read PtDA

No, you know personally I would take the time but perhaps I don’t represent the majority (laughs). I personally would have taken the time to read the whole thing, though. It’s very visual (FG3, participant 15).

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Theme 3: Learning - Would it be relevant to demonstrate how to use the PtDA?

Demonstration is unnecessary

 A demonstration is not necessary

Not for me, no, this is enough, honestly, I don’t see the point of a video (FG3, participant 15).

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8

Demonstration could be necessary

 Demonstration in some cases

Exactly, for someone who’s overwhelmed by their pregnancy, perhaps being pregnant took a lot of getting used to, someone who has a condition, perhaps it would help them to have extra support other than just being told to read it. I’m trying to think, it wouldn’t be bad but I think presenting [the video] systematically every time, that’s not a great idea (FG3, participant 13).

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2

 Healthcare professional to judge the need for demonstration

I think it’s mostly the health professional who should judge whether the person needs it or not (FG3, participant 14).

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1

Theme 4: Support - Do you think you would use the PtDA by yourself or with the help of someone else?

Support is needed

 Decision as a couple

Because we decided together about having a child (laughs) and to be responsible for it, and if it’s a family decision, then it’s for both of us to make … and from my point of view, it’s to involve [the other person] as much [as possible] … if the test is positive, then there are all the consequences that go with that choice. They’ve got to be connected (FG3, participant 13).

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7

 Read with partner or relative

It’s the same for me. Having it in my hands and being able to discuss it somewhere other than in the doctor’s office, even if in our case, we’ve already thought about it, but sometimes it brings up other possibilities, it really shows the way to go and it’s good to have it and to be able to discuss it with my partner (FG3, participant 13).

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 In case of misunderstandings

I would use it with my partner too. Look, if there are little things we don’t understand, after thinking about it, and if we had questions, we’d go and see the doctor again to understand it better, and then make our decision (FG1, participant 1).

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2

Support is not needed

 Read alone

No I think it’s maybe better to read it by yourself without someone commenting every 30 s on what you’re reading. Because that’ll influence you. Say you’re reading it together and for example he says, well, maybe not, you get comments and it can kind of influence your judgement (FG1, participant 2).

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6

Theme 5: Other’s approval - What do you think of the opinions of other people on the use of the PtDA?

 Other’s approval (pregnant women, relatives…)

Not for me personally, no, because someone might be pregnant in your group, or even let’s say a mother, it’s more to reassure you; you make friends and yes you talk all the time but I’d never just rely on a mother for that; anyway, we’re all different, even the things I say I’m not the same as others … Having the approval of other people is worth nothing. It’s worth absolutely zero (FG2, participant 7).

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 Healthcare professional’s approval is implied

For sure you have to go through that stage. Then when you get there he automatically gives it to you. My doctor gave it to me so I imagine he thinks it’s worth something (FG3, participant 15).

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1

Thème 6: Consequences - What do you think the consequences would be (advantages, disadvantages) of using the PtDA, or of not using it? Would you like more information about the advantages/disadvantages of using the PtDA or not using it?

Consequences (advantages and disadvantages) of using the PtDA

 Advantages of using the PtDA

Yes, there’s enough information on it. But to have it, and to know the statistics, I think that’s great, I have to say. The advantages and disadvantages too, you know what you’re up against, look it’s really clear, and that’s really helpful (FG3, participant 15).

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 Disadvantages of using the PtDA

The doctor tells you want to do, like she just said, and you think you’ll just do the test but you don’t know anything about what that means. But then when you know everything that could happen, it makes you even more worried (FG1, participant 3).

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8

Information about consequences

 Information about consequences is not necessary

Look, people get into a panic when you get too negative … (FG1, participant 5).

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7

Theme 7: Reward - Do you think a reward is needed for using the PtDA?

 No need for a reward

No, I see it as a tool that is there to help you, so I don’t see why you’d need a reward for using it. I mean, if people don’t want to use it, then they don’t have to! (laughs) But I see it as an aid, so I think if you take it, it’s because you want the information, not because you feel obliged to use it (FG1, participant 2).

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 A reward wouldn’t change anything

For me what’s important about this tool is that you use it and then it makes you think about things, and know more [what you want]. From the moment I read it and did it, personally it gave me something. Even if my doctor was really pleased I did it, that wouldn’t make much difference, it wouldn’t add much. It did its job when I took the time to fill it out (FG3, participant 13).

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2

 Healthcare professional could offer positive reinforcement

Yes okay the doctor could do that, he could go, I’d really like that [if you] used a tool I suggested, but they do positive reinforcement without realizing it, they might say it’s great that you used it, it’s something they’d say without even thinking about it, I don’t know if that’s what you mean by a reward, but it often happens that just saying it’s good you used it … (FG1, participant 5)

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 The PtDA is its own reward

The reward is having the tools and having the information. We don’t need a trophy! (laughs), we don’t need a reward you know (FG1, participant 4).

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Theme 8: Change - What kind of changes could be made in the places you go to encourage you to use the PtDA?

Suggested changes for the use of the PtDA

 Screen

Screens work really well, better than posters (FG3, participant 14).

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 Poster

And like we were just saying, perhaps a poster in public places where pregnant people are likely to go, at least a poster that could at least tell you there’s this information you can get. And where it’s available. That’s the thing. (FG1, participant 1).

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2

Places to make changes

 Medical environment

I don’t really see it outside a medical setting either (FG3, participant 15).

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 In the hospital

Yes I think a sign in the waiting room that summarizes what’s inside it, not like an ad, but as information, that could be good because you’re sitting waiting in the waiting room and I read what’s going across the screen, but not an ad, really a summary of what’s inside it, in the information (FG1, participant 4).

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