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Table 2 Suggested interventions for informational support with illustrative quotes

From: Involvement of persons with lived experience of a prenatal diagnosis of congenital heart defect: an explorative study to gain insights into perspectives on future research

Suggested interventions Illustrative quotes
Supplemental written information 1. I think it feels good to be able to get a note or brochure [containing information]. (Father 1)
2. I thought that everything was completely clear when I sat there and got the information, but then I came home and was going to tell my grandmother, maybe, or someone else about it, and then I couldn’t remember and I didn’t know how it was. (Mother 2)
3. Somethat that would really be a help in any case would be to get a piece of paper. Perhaps just one or two pages of general information about the heart but also where you can look for information. (Mother 3)
4. All the information about what to apply for and what help there is and things like that comes too late. (Father 2)
5. I think it feels good to be able to have a leaflet like that, a brochure. […] Maybe you sit at home and read it, you maybe go to your grandparents and take it with you. You don’t have to go on the Internet. (Mother 3)
6. For me an information website on the Internet would probably have been enough […] Purely information, that is. (Female 2, pregnancy termination)
7. We were very happy anyway that we could go home and read the information on the Internet. (Male 2, pregnancy termination)
8. I don’t remember half of what he [the doctor] said, mind you. (Female 1, pregnancy termination)
9. Yes, you can find all kinds of strange things that you shouldn’t read [on the Internet]… (Female 3, pregnancy termination)
  10. Information on a website is a good start. (Male 2, pregnancy termination)
Follow-up consultation 1. Often when you read, questions arise and sometimes you don’t have any more contact with the doctors before you have to reach a decision. (Mother 2)
2. Then perhaps you could meet a few days later and go through it again, because you digest it and take things in and interpret. And you distort things a bit. (Mother 3)
3. I would have appreciated the same information repeatedly […] A second consultation with a physician or a specialist. […] A whole lot of questions usually arise, the more you read about it. (Father 1)
4. Because I noticed when I was there afterwards that I would have preferred a follow-up talk with a midwife or something like that. (Female 2, pregnancy termination)
5. We met two doctors and I think that was why we could take it in better […] The second time we were more open because we had had time to think a bit. (Female 1, pregnancy termination)