Dimensions of Acceptability questionnaire
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Participants’ preferences and suggestions
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N=
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Illustrative quotes
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Presentation
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Clearer graphics of DAv2014
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24/34
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“The esthetics of DAv2014 is more interesting, more modern… And the graphics, with those little symbols… when you go through it quickly, you know, that pair of scales shows that it’s talking about the pros and cons, and then there are the numbers. So you don’t have to read it to know what kind of information to expect and you can go directly to what interests you.” (MN-26-25/Partner)
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Simpler color scheme of DAv2014
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19/23
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“I much prefer the simplicity of the Dav2014 [colour scheme]. In DAv2017, the choice of colors varies… pastel colors here, different colors here and there, it makes the whole thing a bit more confusing.” (MN-31-20/Woman)
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Larger font size of DAv2014
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21/35
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“There’s too much text [DAv2017], so the fonts are too small.” (MN-31-20/Woman)
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Format of both could be more convenient
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15/39
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“I think of myself, when I go to appointments, I like everything to fit in my handbag. So … it could be the same format as the Pregnancy Kit, that would be good. If not you end up with all these huge bits of paper.” (GYN-31-18-Woman)
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Suggestion for presentation
Present the decisions to be made in logical order
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“The first question to ask is … do you want to do the test? And then which prenatal test should I choose. Because the way it is [choice of tests, then whether to do test or not], basically you’ve already made the decision to do the test. After [deciding to do the test], then you can think about [which one].” (MN-28-17-Partner)
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Information : content
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Different types of trisomy
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9/39
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“This is the kind of information [about T13 and T18] I like to read. Because no-one’s talked to me about this before, and I’m in my third pregnancy. Plenty of doctors could have mentioned T18 and T13, but it’s never happened. So having that information here is really interesting.” (MN-25-32/Woman)
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That Down syndrome children can have a rewarding life
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3/39
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“The implications [of having a Down syndrome child], that they can be independent but will need some, uh, some accompaniment. We knew it already but for someone who was less familiar [with Down syndrome], it’s interesting to have that information.” (GMF-27-05/Woman)
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Information missing in both DAs
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27/37
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“What’s missing in terms of information on Down syndrome is more statistics on how families cope, is there government support, are families with a Down syndrome child happy, or is it miserable for them … is it like having a child with cancer, with suffering every day, or are they happy like they’d be with a healthy child, but it’s just that there’s social discrimination. That can be serious, but it’s… There must be studies on this, on how people feel, do they feel helpless about it or not. Do they regret their decision, so that 20 years down the road, even if they love the child, they think perhaps they would have done differently.” (MN-30-18/Woman).
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Suggestions for missing information
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“Perhaps add suggestions on readings, not complicated philosophical treaties, but on ethics and on the education of a [Down syndrome] child and on programs offered.” (MN-30-18/Woman+Partner)
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Information : amount
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It doesn't matter how much information
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17/30
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“For me, making a decision involving a future child, I’d automatically go online and read as much information as I could because it’s a super important decision. So I don’t think people would complain about the quantity of information. I think the more you have, the more reassured you feel…. The more information I have, the more details, the more arguments for the options, the advantages, the more I’ll be comfortable with my choice.” (GMF-27-11/Partner)
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Too much information in DAv2017
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11/29
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“It’s not that the words are hard to understand, it’s the amount of information. You should look at it first with someone… I don’t mean to criticize, but someone who doesn’t have much education could be a bit overwhelmed.” (MN-38-05/Woman+Partner)
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“Still, a mother who doesn’t like reading much… she’s going to just read the titles and the graphics … and perhaps she’ll be scared to see a huge page full of text.” (GYN-31-18-Woman)
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Information : comprehensibility
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Too many acronyms in DAv2017
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7/39
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“There are lots of abbreviations in DAv2017 so sometimes I was a bit mixed up. So I was like, trying to remember what the different tests are. So it’s confusing because we’re not familiar with those expressions [acronyms], so after it was harder to remember which was which.” (MN-26-25/Woman)
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Suggestion
Replace frequencies with percentages
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“Instead of putting the number of women, perhaps put the percentage so you understand the proportion, sometimes that helps to better … the 22 women, the 22 of the 521 women, ok, but we don’t necessarily know what that proportion is… Someone who looks at it quickly won’t understand the importance …” (GYN-31-18-Woman)
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Values clarification exercise
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Listing pros and cons (DAv2014) better than circling stars (DAv2017)
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12/23
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“The [list] is better, because it’s all on the same page, so when you’re making the decision it puts things in perspective because you can see [the pros and cons] right there … and when you’re making a list of the pros and cons, you can see which is the longest and shortest… I think it’s better than the stars because visually when you [circle] the stars it doesn’t necessarily mean much to you.” (GYN-30-22/Woman)
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Neither the list nor the star circling is necessary
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3/23
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“I didn’t see the point of the stars … Perhaps I didn’t need to write out [the pros and cons] or circle [the stars] to make my decision, but that’s a personal choice … I don’t really mind either the list or the stars being there.”
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Suggestion
Remove the star circling exercise
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“Personally, if you’d given me that I’m not sure I would have circled those stars. I know it’s there to show that it’s really the patient’s own decision. But even so, I don’t think I would have circled them.” (GYN-31-18/Woman)
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Balance
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Slanted one way
(re. taking the test or not)
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4/34
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“Just a comment … In DAv2014 there’s the same amount of space for advantages and disadvantages of doing the test or not, so you have the impression that [the balance] is 50-50. But in DAv2017 you have a choice of the three tests and the choice “not to do the test” – So you have 3/4 of the page on doing the test and 1/4 on not doing it – so there’s bias towards doing the test in DAv2017…” (MN-36-28/Partner)
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Usefulness
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Useful for making a decision
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16/38
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“I find [the information on the options] super interesting and it’s something you don’t often hear about, it shows exactly what all those options are and it’s not just about I do it or I don’t do it, it’s basically what am I doing, or what am I not doing.” (GYN-30-22/Woman)
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Navigation
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Easier navigation in DAv2014
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11/34
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“That’s really the big problem. It’s really too dense. So it’s not easy to read. I have ADHD, you see, but I know I’m not the only mother has ADHD. So when we’re tired, our brains don’t work properly. So to figure all this out, it’s a bit confusing; so like in this one [DAv2014], there’s only T21 in the table, whereas here [DAv2017] there are all the others too. At some point it becomes too long to read, too dense. You could solve the problem by dividing up the sections better, because the information is good.” (MN-25-32/Woman)
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Other
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Partners not given a place in the DA
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3/39
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“What I found disappointing in both [DAs] was that they were talking just to the woman, but the man should also have an important role in making that decision. It’s as if it’s just the woman who decides whether to do the test or not and her husband has nothing to do with it.” (GYN-34-19/Woman)
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Suggestion
Add partner’s opinion / decision / consent to live with a Down syndrome child
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“Perhaps in the other factors [to consider] you could have the partner’s agreement to living with a Down syndrome child… because you’re not gonna raise the child alone and it’s a decision that should be made together, after all.” (GYN-34-29/Woman)
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n: number of people giving their opinion / total number of people who gave an interpretive response
Participant code: Clinical site - mother's age - recruitment number/person who gave the answer
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