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Table 5 Reasons for not participating in a prevention study

From: Parents’ perceptions on offspring risk and prevention of anxiety and depression: a qualitative study

Main themes Citations
Parental overburden #3 “I can’t do this [participating] as well”
- Parental symptoms and disorders #7 “I would have liked to [participate], but then again not really, and I think ‘how do I get there? I am afraid to drive with these meds”
- Ending the Mental Health care period in your life #2 “…and if you’re almost finished at a particular moment, then I want to finish up too… I don’t think that you should, if you are finished…that you should keep dragging things up by participating in all sorts of studies, because then it keeps it alive and you can never finish. And now I’ve finished this off. Done”
- Time investment and paperwork #4 “It’s purely the time investment, (…) And you just shouldn’t give me a pile of paperwork… [laughs]. Filling out paperwork, that’s a horror for me. I also outsourced all paperwork at home”
#21 “Also, I work 40, 44 hours a week, so… when I come home… then there are 2 nights that my wife works, so the time you have left.. plus she also works one day, add up sports one time a week (…) we don’t have time left”
- Participation too confronting #22 “I could imagine that people would not participate, because they will be confronted with their own issues. For example: ‘do I spend enough time with my children and do we have enough fun?’ Things like that, do I dare to hold up a mirror? Their father finds that very difficult, so he didn’t participate”
Child burden  
- Protecting children from possible negative effects of participation in preventive research #23 “I have my doubts that it’s completely without risk…I call that a reversed placebo effect…if you treat people then they think, ‘I am being treated thus I am sick, so there is something going on’. And, I’m not waiting on that, naturally… that would be my fear“
#14 “I just didn’t want to make her worried”
- Child too young #23 “When they’re older it becomes easier for them to put it in context? Then they can participate themselves, choose for themselves if they want to participate, but, to be honest, we still have to prepare them for it… But when they’re young it’s just different, and if you don’t see any problems, you don’t go looking for them”
Children refuse to participate #16 “It was, naturally, on a voluntary basis, so (son, almost 14) is naturally really an adolescent who won’t do things in his free time, which is sacred to him”
Stigma #14 “He [father] says: ‘[if we participate] then she’ll get a patient file, and she gets labelled and she’ll never get rid of that label’
#17 “…I don’t want anything to do with the [Mental Health] business”
Shame, embarrassment #23 “The reason for me for not participating was that we should have told them [children] the whole story, and well, it’s a difficult story…”
#8 “I think I am secretly really afraid of that, of what she [daughter] might say”
No worries about the children #23 “And I don’t see that they have a problem,… I'm actually 99.9 percent sure, symptom-free, which is good”