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Table 3 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
Peer support 1. You can just offer that it exists. Just to know it exists. Then you yourself can decide if you want [to meet others with experience]. (Mother 1)
2. The Swedish Childrens Heart Association [patient organization], they should also help with this. And unfortunately you get, you usually get all the information and everything after the child has been born. (Father 2)
3. I think that contact where you can ask questions is good. And it doesn’t have to be a meeting in person. But there is also this Facebook page where everyone can ask questions, there are a lot of people who reply. You have a lot of thoughts and questions. (Mother 3)
4. I would think before the first two weeks would be good maybe [to meet peers], because then you have… Mentally prepared, I think. (Father 1)
5. Afterwards [after the termination] I would like to talk to someone who has gone through a similar experience. That would be very beneficial. (Female 1, pregnancy termination)
6. I wanted to hear others who had gone through this, how things had gone for them afterwards, there were a lot of question marks. (Female 2, pregnancy termination)
7. It was a wish I had. I would have liked, perhaps not exactly in the heat of the moment when things were at their worst, but after a while [to have talked with peers]. (Female 3, pregnancy termination)
Additional professional psychosocial support 1. And perhaps if you can get help afterwards, like counselors who help you with everything, both your soul and paper and social insurance and whatever. (Mother 2)
2. Perhaps a telephone number you can ring 24 h a day, that is irrespective of what questions you have on your mind. (Father 2)
3. When you go through these kinds of things, the least you should be offered is to talk with a social worker. And by that I mean to really talk, not just to sit down for fifteen minutes. (Female 1, pregnancy termination)
4. I received really good help. I had a doctor who informed us that our fetus had this heart defect and who followed us the whole way and who even also phoned us afterwards and made an appointment for a talk, a little follow-up talk, how things are now, do you experience. So I experience that I have received that for my part. And it was worth a lot. I hope that everyone receives that. The support… (Female 3, pregnancy termination)