Skip to main content

Table 3 Attitudes towards participating in NAKO: main themes

From: Investigating people’s attitudes towards participating in longitudinal health research: an intersectionality-informed perspective

Theme

Respondent characteristics

Quotes

Code(s)

Wanting to make a contribution

Participant, m, 27

‘I think it’s very important. It’s like the NAKO represented it, it is very important for society that we understand more about common risks and widespread diseases, how they arise etc.’

Societal significance

Participant, m, 70

‘Well, it was important to me. You can always talk about society and complain about it, but one has to actively take part’

Societal significance

Participant, f, 46

‘And with voting, it is similar, right? Many people around me say they don’t vote anymore… but I really think that I do have a responsibility, for society as a whole, not just for myself and my family… one is part of society, I expect something from it, but then I also have to give back to it’

Research participation as community work

Participant, m, 54

‘Well, for me it is similar to, say, donating to the Third World. That I provide my time for important, interesting information to be collected’

Research participation as community work

Participants, m, 53

‘I owe my life to allopathic medicine, at least two or three times…and thus I saw this as an opportunity to give a little bit back’

Desire to give back

Participant, f, 55

‘I know this story from paediatric oncology… We were told, this was over 20 years ago, that data in paediatric oncology are centrally collected and doctors proceed according to specific therapeutic protocols [based on these data]. And so it was important for me, perhaps, to pay back something, to a certain extent, yes, to medicine, or to society’

Advancing science; desire to give back

Seeking personalised health information

Participant, f, 38

One reason, of course, was personal interest, you can get a check-up, you get medical tests and then the results, and perhaps you can see if something is not completely ok. I would not go to my GP out of boredom’

Rationales of study vs. healthcare system

Participant, f, 48

‘Well, I had a small issue, nothing major, health-wise. And they conduct one or two examinations which normal GPs don’t do…’

Rationales of study vs. healthcare system

Participant, f, 55

‘Well, but I still try to be physically active, within the realm of possibilities, and watch my diet etc.…and I didn’t expect the NAKO to uncover anything I didn’t already know about’

Participation as health practice

Participant, f, 48

‘I think, I had done sports before and I still do sports, and regarding my diet, this is more – well I think there my health consciousness is increasing with age, right, and I’m really annoyed that I’m beginning to need reading glasses. I really hate it’

Participation as health practice

Excitement and feeling chosen

Participant, f, 46

‘Well I think it’s exciting, that I am part of it. Because from what I read in the information sheet, it is a very large study, Germany-wide, and I thought ‘why not’… I actually, oh, it was like ‘what, I was chosen by lot’, it was a bit like winning the lottery’

Being chosen; being part of something big

Participant, m, 54

‘I don’t know anybody else who – maybe this also played a role. I was a chosen one, to participate (laughs)… First I was a bit suspicious, ‘why me’? But then I felt chosen and I wondered, how could I can reject it?’

Being chosen; sense of uniqueness

Using the study as a source of social recognition

Participant, f, 44

‘And it was a time in my life when many issues had cropped up for me, personal but also professional, and I thought ‘well, it’s actually a good moment, to look at this, for myself. So this was definitely involving self, self-interest. To participate and say, once I am there, I can also ask some questions’

Professional advice; time for oneself; being seen

Participant, f, 73

‘I didn’t care at this point [that it took so long], one has to take some time for oneself. To get an independent assessment of "how did you manage this at the age of 70, that everything is OK"?’

Time for oneself; recognition of lifestyle; being seen

Participant, f, 39

‘Well if I weighed, say, 125 kg and could barely leave my flat, I don’t think I would have gone… I think this has to do with the topic of recognition. "You’re on the right track, there are some issues but overall, it’s alright". Like an external affirmation of my lifestyle or something like that’

Recognition of lifestyle